impact on general practitioners - department of healthfile/final-eval-4.pdf · 69 6 impact on...
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6
Impact on General Practitioners
Key evaluation findings
• GPs supported key design features of the Pilot pathway, notably the central invitation and Register arrangements and the role of GPs along the pathway.
• The estimated total number of GP consultations resulting from the Pilot was 4,558, of which 96% occurred after the laboratory had sent participants’ FOBT results.
• GPs in the Pilot referred a total of 1,457 participants to colonoscopy or other examination after receipt of a positive FOBT and 994 participants without a positive FOBT.
• GPs’ reactions to the referral for colonoscopy process were mixed, with many stating that the waiting time for follow-up colonoscopy was excessive (median = 30 days).
• GPs favoured the use of electronic forms for collection and transfer of patient information to the Register.
6.1 Background Role of GPs in the Pilot
GPs played an important part in the Pilot and had scope to be involved in the Pilot at several stages along the screening pathway. They therefore dealt with:
• the target population, including participants and non-participants; • pathology laboratories; • colonoscopy service providers; and • the Register. GPs had both clinical and administrative roles to perform. When returning their completed FOBT, participants were asked to nominate the GP to whom their test results were to be sent. Participants were also encouraged to visit their GP prior to completing their FOBT, if they wished, to discuss symptoms, family history, the meaning of a positive FOBT result, or any concerns about the appropriateness of screening. In cases where GPs were visited by a patient still considering whether to complete their FOBT, GPs were asked to explain the Pilot’s objectives and provide information on bowel cancer and screening and how to complete the FOBT. The pathology laboratories were required to send the FOBT test results to the participant, their nominated GP and the Register within two weeks of receiving the FOBT. Pilot participants with a positive FOBT result were then advised to visit their GP. In these cases the GP was expected to refer the person for further assessment as appropriate.
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The patient journey on the screening pathway from the point after GP assessment could involve:
• referral for colonoscopy; • no referral for colonoscopy if, for example:
- bowel cancer had previously been diagnosed; - the patient declined colonoscopy; - the patient had limited life expectancy; - there were significant comorbidities; - there had been a recent colonoscopy (less than 18 months); or
• referral for some other form of examination, such as double contrast barium enema or sigmoidoscopy.
GPs could follow their usual referral arrangements/patterns. GPs were asked to provide information to the Register about consultations with Pilot participants using GP Assessment forms.22 GPs who returned the Pilot forms received an information payment from the Register.
Communication with GPs
Effective communication with GPs was critical given their central role in follow-up of participants, coordination with pathology laboratories, assessment of patients by colonoscopists and feedback to the Register. Communication with GPs was managed by each of the Divisions of General Practice in the Pilot sites, which provided GPs with information and support at the local level. Division activities included orientation evenings, information workshops, visits to GP practices, preparation of local information material, presentations at conferences and updates in GP newsletters. See also section 8.1 on how GP education was managed in each Pilot site.
Sources of GP evaluation feedback
There were three main sources of qualitative information on the impact of the Pilot on GPs for the overall evaluation: (1) Focus group qualitative research: Woolcott’s Qualitative Research, which examined
the views of both participants and non-participants in screening, also targeted a number of GPs in additional focus groups. This included:
• 20 in-depth phone interviews with GPs (6 in Mackay, 7 each in Adelaide and Melbourne); and
• 6 face-to-face interviews with GPs (2 from each Pilot site).
22 There are two GP assessment forms: ‘Referred for Colonoscopy’ and ‘NOT Referred for Colonoscopy.’ GPs were
entitled to claim an additional $6.60 over the standard consultation fee for completion of these forms.
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The GPs were recruited to ensure a spread across large and small practices and different patient demographics. The areas of inquiry through the focus groups included:
• GP feedback on and satisfaction with their role in the Pilot; • their perceptions on the strengths and weaknesses and possible barriers to
participation in the Pilot; • their views on issues the Pilot posed for Aboriginal and Torres Strait Islander people
and people from culturally and linguistically diverse backgrounds; and • suggestions for improving the Pilot (Woolcott 2004).
(2) National workshop on the impact of the Pilot on GPs: In August 2004 the
Department held a national workshop to discuss the Pilot findings with GPs and representatives of key GP stakeholder and professional groups (‘National GP Workshop’).
(3) GP Divisions evaluations: During the course of the Pilot, GPs within the Pilot sites
and on the Pilot working groups also identified a range of issues relating to the Pilot. The Melbourne North East Valley and the Adelaide Western and Southern Divisions of General Practice summarised and reported feedback from GPs involved in the Pilot in their area.
6.2 Views on Pilot model and its operation General observations
The feedback from Woolcott’s Qualitative Research focus groups was that most GPs saw the Pilot as valuable and were particularly pleased to see the Australian Government taking an active role in encouraging preventative health checks. GPs also felt that the Pilot had been well designed and implemented, and commented positively that:
• workload and administration was not unduly burdensome; • communication with them about the Pilot was good; • their duty of care responsibilities were well defined; and • the FOBTs were effective. The general view was that, while there were a few components of the Pilot that could be improved, overall the Pilot had worked well. The increased workload as a result of the Pilot was not seen as onerous. GPs were also quite comfortable with the administration involved as it was part of a program they saw as meaningful and important. In addition, the payment for completing forms and returning them to the Register was seen as an incentive for participation (Woolcott 2004).
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The National GP Workshop emphasised the positive opportunities for GPs involved in a possible national bowel cancer screening program, including opportunities to:
• expand their involvement in population health activities at a primary care level; • develop a greater public health focus at a practice level; • be part of improved, integrated patient care through a GP led holistic and proactive
approach to health care; • further promote and recognise the integral role of the GP in ensuring appropriate referral
to cost effective services; • build linkages and partnerships with other health service providers such as specialists,
hospitals, Aboriginal Medical Services and local and State health authorities; and • further explore the role of practice nurses and support staff in reducing GP work load. All groups represented at the workshop supported key design features of the Pilot pathway, notably the central invitation and Register arrangements, and the key role of GPs along the pathway (DoHA 2004b). The generally supportive views of the stakeholders at the National GP Workshop were reflected by local evaluation feedback from the Pilot sites. For instance, the North East Valley Division commented that there were a number of areas where there could be improvements made to the operations of the Pilot. However, they noted that:
‘The overall response of the GPs is positive. The majority of GPs involved in the Pilot welcome [the opportunity for] an organised National Bowel Cancer Screening Program as they recognise the extent of morbidity and premature mortality from bowel cancer in the community…..Those GPs who gave the Division feedback directly about the Pilot have indicated that they support the model of delivery of the screening program (sending invitation directly to participants) because they did not want to be involved in the distribution of the FOBTs’ (North East Division of General Practice 2004).
The invitation process
Although feedback suggests that some GPs were involved in encouraging people to participate, data from the Register suggests that this was not a major imposition on their time. Table 6.1 shows that less than 5% of GP consultations relating to the Pilot occurred prior to completed FOBTs being returned by participants. However it should be noted that for non-participants in the Pilot, a higher number would be more likely to participate in a future FOBT based screening program for bowel cancer if their GP advised them to (see section 4.7).
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Table 6.1: GP visits by time of visit and reason for consultation
Source: AIHW (a) Participants may appear in more than one column. (b) The positive FOBT column does not exactly match the number of GP consults following a positive FOBT (1,457) because this table refers to the reason a person gave for the consultation whereas the report uses whether or not a positive FOBT was recorded in the Register.
GPs considered that it was impractical for them to provide initial reminders to encourage the target population to complete the FOBT in the first place, unless patients made an appointment to come into the practice. GPs were generally unaware of when the kits were received and they did not necessarily know if a patient had nominated them as their GP. Furthermore, most felt that it carried more weight if the Register followed up invitations with no response – they considered that patients would feel more obliged to respond than if the call was from a GP. GPs generally found patient reactions to the program were positive. GPs who participated in the qualitative research noted that while some patients had been initially reluctant to participate, often that hesitation was replaced by positive reactions after talking to others who participated and finding out how easy the kits were to use. GPs found that:
‘People came to feel it was acceptable or even feel left out if they had not participated. Most felt that they were able to encourage reluctant patients to participate, although they noted that only people who were at least considering participation were likely to consult them in relation to the program’ (Woolcott 2004).
Some GPs interviewed in Woolcott’s Qualitative Research focus groups, particularly in Mackay, expressed concern over access to FOBTs for people without a fixed address. It was mentioned that this group, particularly Aboriginal and Torres Strait Islander people and people in low socio-economic groups, particularly homeless people, did not receive invitations to participate in the Pilot. Some GPs commented that the information packs, in both English and the translated versions, were too complicated for people with low literacy and those from culturally and linguistically diverse backgrounds (Woolcott 2004).
Reason for consultation - frequency (a) Indicative estimate of GP
consults (a)
Phase/time of GP consultation
Present with
symptoms
Multiple issues (including
bowel screening)
Positive FOBT (b)
Bowel screening
only
Number %
Prior to kit being sent 16 34 9 18 77 1.7
After kit sent, prior to its return 10 53 8 42 113 2.5
After kit returned, prior to result sent 5 16 9 15 45 1.0
After result sent 270 1,168 1,374 1,511 4,368 95.8 Total 301 1,271 1,400 1,586 4,558 100.0
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Responding to positive FOBTs
GPs performed an important role in the operations of the Pilot once a participant received a positive FOBT result. The Register data indicated that only 62.1% of participants visited their GPs after a positive FOBT, which suggests that either:
• a significant number of participants who had a positive FOBT did not visit their GP; and/or
• A high proportion of participants did not have their GP Assessment forms returned. Figure 6.1 shows that the proportion of participants with a positive FOBT who visited their GP varied significantly across the Pilot sites (Mackay 74.7%, Adelaide 63.%, and Melbourne 53.4%). These differences are further explored in Section 6.5. The proportion of men who had a positive FOBT who went on to visit a GP (57.8%) was significantly lower than for women (67.2%). Similarly, the proportion was lower for people speaking a language other than English compared to English speakers (48.3% compared to 65.8%) (AIHW 2004).
Figure 6.1: GP consultations following a positive FOBT
4 8 12 16 20 24 28 32 36 40 44 48 52 56 60 64 68 72 76 80 840
10
20
30
40
50
60
70
80
Weeks since positive result sent to participant
Mackay
Adelaide
Melbourne
All sites
GP attendance (per cent)
Source: AIHW (2004)
Table 6.2 shows that the median waiting time between a positive FOBT result being sent to a participant and a GP consultation was nine days. This suggests that most GPs had relatively efficient processes for follow-up once a patient received a positive result.
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Table 6.2: Waiting times between positive FOBT result and GP consultation Phase of activity Days waiting Mean Median Maximum Time between result sent to participant and GP consultation occurring 19.4 9 358
Source: AIHW
GPs clearly saw that the Register would have the ultimate responsibility for reminders because the Register had access to all the necessary information to undertake the follow-up and there was a risk that those people without a nominated GP would ‘fall though the net’. However, many saw it as good practice to follow-up their patients once there was a positive test result. Most GPs consulted in Woolcott’s Qualitative Research focus groups were comfortable with their duty of care responsibilities in the Pilot. Their view was that the duty of care remained with the Register until a patient consulted them regarding a positive result or a symptom. However, some changes were suggested to further clarify responsibilities. These centred around the program communications encouraging patients to consult their GP, or a GP if they did not have a regular doctor. Firstly, patients receiving positive FOBT results who had not nominated a GP should be encouraged to consult a GP. Secondly, while patients with a nominated GP who tested positive were advised to consult their GP, a timeframe was not specified. A timeframe of two weeks was suggested as appropriate.
The colonoscopy referral process
Table 6.3 shows the number of GP visits by age and gender. Table 6.4 shows the proportion referred for colonoscopy, other examination or not referred for further investigation by age and gender. Of the 1,437 participants who visited their GPs after returning a positive FOBT, 1,393 participants were referred to colonoscopy or other examination (696 males and 697 females). The proportion of people with a positive FOBT who were referred for colonoscopy did not vary significantly by Pilot site, age, or sex. There was no significant variation in referral rates by quartile of socioeconomic status or whether or not the person spoke a language other than English.
Table 6.3: GP visits by age - participants with a positive FOBT Age Males Females Total
55–59 184 162 346
60–64 149 161 310
65–69 211 188 399
70–74 187 215 402
Total 731 726 1457
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Table 6.4: Referral by GP for colonoscopy - participants with a positive FOBT Males (Rate per 100 GP visits) Females Males (Rate per 100 GP visits)
Age Referral for colonoscopy
Referral for other
examination
No referral
Referral for colonoscopy
Referral for other
examination
No referral
55–59 95.1 1.6 3.3 95.7 1.2 3.1
60–64 92.6 2.7 4.7 93.8 2.5 3.7
65–69 92.4 1.9 5.7 94.7 3.2 2.1
70–74 93.6 1.1 5.3 91.2 2.3 6.5
Total 93.4 1.8 4.8 93.7 2.3 4.0
ASR 93.6 1.8 4.6 94.1 2.2 3.7
95% CI 86.5–101.1 1.0–3.2 3.1–6.4 87.0–101.6 1.3–3.5 2.3–5.6
Source: AIHW (2004)
Table 6.5 shows the number of recorded GP visits for those who did not have a positive FOBT. Table 6.6 shows that GPs referred a significant number of participants without a positive FOBT for colonoscopy or other examination, totalling 994 cases (368 males and 626 females). The proportion of people without a positive FOBT who were referred for colonoscopy did not appear to vary significantly by sex or whether or not the person spoke a language other than English. However, the referral rate for follow up examination following a non-positive FOBT was higher for younger people than older people (p < 0.0001).
Table 6.5: GP visits by age - participants without a positive FOBT Age Males Females Total
55–59 302 536 838
60–64 263 445 708
65–69 276 409 685
70–74 233 423 656
Total 1,074 1,813 2,887
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Table 6.6: Referral by GP for colonoscopy - participants without a positive FOBT Age Males (Rate per 100 GP visits) Females Males (Rate per 100 GP
visits)
Referral for colonoscopy
Referral for other
examination
No referral Referral for colonoscopy
Referral for other
examination
No referral
55–59 32.8 4.3 62.9 33.0 4.5 62.5
60–64 35.7 2.7 61.6 35.7 4.3 60.0
65–69 29.7 2.5 67.8 27.4 4.2 68.5
70–74 23.6 4.7 71.7 21.7 6.1 72.1
Total 30.7 3.5 65.7 29.8 4.7 65.5
ASR 31.0 3.6 65.4 30.2 4.7 65.1
27.7–34.6 2.5–4.9 60.6–70.4 27.4–35.1 3.3–6.0 59.1–69.8
Source: AIHW 2004
For participants without a positive FOBT:
• the referral rate was significantly higher in Mackay (44.0%) then either Adelaide (21.5%) or Melbourne (25.6%, p < 0.0001);
• the referral rate in Adelaide was significantly higher for the second highest quartile (27.0%) than each of quartiles 1, 3 and 4 (16.4% (p = 0.002), 12.8%, (p=0.04), 17.8% (p = 0.01); and
• of the 994 people referred for a follow-up examination, 890 (89.5%) were referred for a family history and/or symptoms of bowel cancer and 33 (3.3%) were referred because of a positive FOBT result even though no such result was recorded on the Register. No reason for referral was recorded for the remaining 71 people.
During the Pilot the median waiting time between the GP consultation and a colonoscopy occurring, where there was a positive FOBT, was 30 days (see Table 6.7). Table 6.7: Waiting times for conduct of a colonoscopy where there was a positive FOBT result
Days waiting Phase of activity Mean Median Maximum Time between GP consultation and colonoscopy occurring
38.5 30 394
Source: AIHW
Some GPs stated that the waiting times for colonoscopies had been too long during the Pilot and there had been insufficient specialists to deal with the numbers coming through the Pilot. They commented that this generated anxiety for patients. As a result, there were concerns expressed as to whether there would be enough specialists to cope with the increased demand for colonoscopies generated by a potential national program. It was suggested that better measurement and prioritisation of urgent cases would improve queuing times. Others believed this was less of a problem because they had been able to
95% Confidence
Interval
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prioritise urgent patients if a patient had other indicators of bowel cancer in addition to a positive FOBT result, such as family history or other clinical signs. The GPs that experienced this were reasonably comfortable with the waiting times as they felt they were able to manage their patients’ expectations by letting those who had to wait for longer know that the risk that their positive test result meant bowel cancer was low. Others also noted that despite the issues with waiting times, the Pilot had provided better access to colonoscopies through the public system than had previously been available. There were concerns over whose responsibility it was to ensure the completion of the referral process. Some GPs believed that there was no system in place to confirm when referrals for colonoscopies had been received. GPs said they would be more comfortable if the referral process included some form of check so they would know that a referral had been received, rather than the Register following up when no colonoscopy occurs within a pre-determined period.
6.3 Reactions to the GP education program There were mixed reactions to the information that GPs received regarding the Pilot from the Register and the Divisions. There was a common perception that too much information had been provided on the program prior to its commencement. This related to both the workings of the Pilot and bowel cancer generally. In relation to the former, a number of GPs had been concerned about their role in the program and the time involved, after attending an information session. They talked about having received a ‘huge’ file of information to read which gave them the impression that the administration would be highly complicated (Woolcott 2004). It was only after the Pilot started that they realised that the administration was in fact not difficult or overly involved. Some recommended that the information packs given to GPs be greatly reduced with only one or two pages outlining the process. Many found general education on bowel cancer to be unnecessary as this was basic information that they had learned in medical school. Although many GPs believed that in general they had received too much information prior to the Pilot, there was one aspect of the education that they had found particularly useful – the efficacy of the FOBTs used. Perceptions of the tests depended on ‘what articles they had read’. They therefore felt that education from the Divisions early in the Pilot on the effectiveness of the tests being used in detecting cases of cancer and reducing bowel cancer mortality was important. A number also found feedback during the Pilot on how the program was working and how many cases had been picked up was useful in reinforcing the value of the FOBT as a screening test.
6.4 Opportunities to improve GP administration processes Most GPs interviewed during Woolcott’s Qualitative Research felt that effort had been taken in the development of processes and forms to make the administration as easy as possible. Furthermore, most felt that, as their dealings with patients regarding the Pilot had been spread over an extended period, they were not overloaded with too many patients at any one time. GPs suggested there were a number of opportunities for improvement in the program’s operations. Almost all interviewed for the qualitative evaluation mentioned that the forms
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lacked a participant number, despite there being a box for insertion of these details on the GP forms. Initially, a number of GPs had spent time trying to find out this number when completing the forms. Eventually, they tended to leave this field blank, so it was seen to be an unnecessary item. Some GPs were worried that failing to complete this item meant they would not receive payment as they had not filled in the form correctly. Another issue identified with the forms was the difficulty in telling the Referral and Non-referral forms apart. Many GPs suggested that the forms should be colour coded to overcome this confusion, or simply be combined with the option to tick a box to indicate whether the participant under consideration was for referral or non-referral. In addition, it was recommended that the forms should include a section with additional space where GPs could provide information deemed necessary, such as medication history and notes from the medical examination. Another recommendation for form design was that the contact details of the Register and the Helpline should be included on the forms to save GPs from having to look elsewhere for this information. GPs were in favour of the use of electronic forms for collection and transfer of patient information. Most GPs felt that this would be much easier and consistent with the way they were doing the rest of their practice administration, but they noted that the forms would have to be compatible with their practice software in order to prevent double handling. Some GPs reported being confused by the system of payments in the Pilot. They found it difficult to reconcile payments. Specific item numbers were offered as a suggestion to overcome this problem.
6.5 GP quality assurance Proportion of participants with a positive FOBT visiting their GP
The data, as recorded in the Register, suggested that a significant number of participants that had a positive FOBT did not visit their GP. The 1,437 participants that visited their GPs after a positive FOBT is significantly lower than the 2,317 participants that had a positive FOBT (62.1%), and a significant difference was observed across the Pilot sites. It was not possible to determine whether the low rate, particularly in Melbourne, was due to failure of participants with a positive FOBT to see their GPs, GP visits being undertaken outside the Pilot areas (and therefore going undetected in terms of Register data collection), reporting failure of GPs to provide data to the Register, or reporting failures in data transfers to HIC and/or from HIC to AIHW.
GP referral rate for follow-up colonoscopy without a positive FOBT
The Register data indicated that there were 994 people referred for follow-up examination without a positive FOBT. The majority of these participants (n=890, 89.5%) were referred for a family history and/or symptoms of bowel cancer. The data suggests that referral for follow-up examination without a positive FOBT occurred more frequently in Mackay (44.0%) than Adelaide (21.5%) or Melbourne (25.6%).
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Waiting times
A major quality indicator for GP involvement in the Pilot related to waiting times. As discussed above, GP waiting time data was collected and monitored during the Pilot. This included tracking:
• the time between the FOBT result being sent to the participant and the GP consultation occurring (median waiting time of 9 days); and
• the time between the GP consultation and a follow-up colonoscopy occurring where there was a positive FOBT (median waiting time of 30 days).
These waiting times were successfully monitored during the Pilot’s operation and overall appear appropriate.
Areas for possible further work
• Explore the possibility of electronic forms and electronic submission of forms to the Register.
• Identify mechanisms to keep GPs in the loop on when a follow-up colonoscopy has taken place and the results of the colonoscopy.
• Expand education and awareness activities to cover the area of population screening and the role of the GP more generally, with attachment of continuing professional development points to this.
• Promotion of the application of the NHMRC Guidelines when considering referral of a participant with a negative FOBT result for colonoscopy.
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7
Impact on colonoscopy services
Key evaluation findings
• Colonoscopy services played a fundamental role in the screening pathway. There were 1,833 follow-up colonoscopies for the Pilot recorded in the Register (some of which related to participants without a positive FOBT result).
• These colonoscopies identified 69 cancers and 195 advanced adenomas, including those detected in Pilot participants who did not have a positive FOBT result.
• Pilot sites reported a substantial increase in staff workload, in part due to a significantly higher FOBT positivity rate than was originally anticipated.
• At major colonoscopy centres, the use of a dedicated nurse practitioner and pre-admission clinics, prior to providing follow-up colonoscopies, were viewed as effective demand management strategies.
• Problems with limited returns of histopathology data highlighted that tracking a participant through the entire screening pathway is integral to data integrity on the outcomes of screening.
• Workforce capacity to meet increases in demand is dependent on the FOBT positivity rate, and workforce modelling will need to be undertaken to further assess potential workforce impacts of a national program. Workforce capacity is a critical issue to be considered in the implementation of a national bowel cancer screening program.
• Funding based on bulk purchase of follow-up colonoscopy services was supported by specialists.
• Observers highlighted the need to establish funding mechanisms to support the provision of quality colonoscopy services, for example, through linking payments to accreditation of facilities and credentialing of proceduralists.
• Overall, colonoscopy services reported very positive feedback on the operations of the Pilot.
7.1 Background Role of specialists in the Pilot
Specialists had direct experience with the following parts of the Pilot screening pathway:
• the target population; • GPs; • histopathologists; and • the HIC Register.
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Specialists had several important roles in the Pilot:
• provision of follow-up diagnostic procedures associated with referrals received from GPs; • appropriate clinical management of Pilot participants (as per NHMRC clinical guidelines);
and • provision of information to the Register about procedures and results for Pilot
participants. Specialists were therefore involved in both clinical and administrative roles for the Pilot. Specialists were asked to complete forms to provide information to the Register on the outcomes of a colonoscopy procedure. These comprised a Colonoscopy Report form and a Procedures Report: Adverse Outcomes at Time of Procedure form. The histopathology processing of tissue collected during follow-up colonoscopy services for the Pilot was undertaken in the usual manner for each colonoscopy service. Reporting forms were developed for histopathologists to provide data to the Register regarding Pilot participants, but at the time of preparing the overall evaluation report, there was little histopathology data reported to the Register. Both colonoscopy providers and pathologists received an information payment from the Register for each completed Pilot form returned.
Communication with specialists
In Victoria and South Australia, the State Health Departments were responsible for distributing information packs to specialists who would possibly be in contact with Pilot participants. Specialists were identified by asking GPs in the Pilot sites which specialists they referred to and through HIC data. Pilot information packs were then posted to the specialists and on-site presentations on the background to the Pilot were provided. In Queensland, the Mackay Division of General Practice distributed the Pilot information packs to specialists.
Evaluation of Pilot impact on colonoscopy follow-up services
During the course of the Pilot, health professionals within the Pilot sites and on the Pilot working groups identified a range of issues relating to colonoscopy quality and workforce capacity. In January 2004, a small group of experts, including colonoscopy service providers, representatives of professional bodies and high-level health administrators, gathered to discuss the quality and workforce issues that may impact on the implementation of a national screening program. In April 2004, the Department held a national workshop with experts from around Australia (‘National Specialist Workshop’) to expand consideration and discussion on the issues (DoHA 2004a).
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7.2 Results of follow-up colonoscopy The Register data indicated that these 1,833 colonoscopies related to 1,794 eligible Pilot participants, which implies that nine participants had more than one colonoscopy.23 The clinical outcomes of the follow-up colonoscopies are presented below. The data indicates that follow-up colonoscopies in Mackay yielded a higher rate of adenoma and suspected cancers than both Adelaide and Melbourne.
Participants with a positive FOBT result
Of the 2,308 participants that had a positive FOBT 1,265 were recorded on the Register as having completed a colonoscopy (55%). The results of these colonoscopies are shown in Table 7.1. The data suggests that a significant number of participants that had a positive FOBT did not receive follow-up colonoscopy, as recorded in the Register.
Table 7.1: Colonoscopy results for participants with a positive FOBT
No cancers or
adenoma
Diminutive adenoma
Small adenoma
Advanced adenoma
Cancer suspected at
colonoscopy24
Total
Mackay 288 21 19 89 33 450 Melbourne
311 10 8 49 18 396
Adelaide 348 9 8 38 16 419 Total 947 40 35 176 67 1,265
Source: AIHW (2004)
It is also important to note that of the 1,043 participants with a positive FOBT and no recorded colonoscopy (Mackay 100, Melbourne 407 and Adelaide 536), some would not have had time to proceed to colonoscopy as at 1 October 2004 when the data was analysed. Further, some follow-up colonoscopy data on participants, particularly in Adelaide and Melbourne, have not been recorded in the Register. (discussed in Section 7.5 below).
Participants without a positive FOBT result who proceeded to colonoscopy
There were 529 participants who did not have a positive FOBT but still underwent colonoscopy. Of these, 524 had a negative FOBT while the remaining 5 participants did not have an FOBT pathology result recorded in the Register before undergoing colonoscopy (although, they probably had symptoms or a family history and were referred directly for colonoscopy, as allowed under the Pilot). The results of colonoscopy for these participants are shown in Table 7.2.
23 These numbers exclude 100 reported colonoscopies for people who were ineligible for the program or inappropriate for a
population based FOBT screening program.
24 It was not possible to determine staging for cancers suspected at colonoscopy due to incompleteness of histopathology data in the Register.
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Table 7.2: Colonoscopy results for participants without a positive FOBT
No cancers or adenoma
Diminutive adenoma
Small adenoma
Advanced adenoma
Cancer suspected at colonoscopy
Total
Mackay 349 13 4 16 2 384Melbourne 35 2 0 1 0 38Adelaide 103 2 0 2 0 107Total 487 17 4 19 2 529
Source: AIHW (2004)
None of the 5 participants who proceeded to colonoscopy without completing an FOBT had a cancer or advanced adenoma detected.
All participants who proceeded to colonoscopy
The combined results of colonoscopy for all participants, either with or without a positive FOBT, are shown in Table 7.3. In total, there were 195 advanced adenomas and 69 suspected cancers identified during the Pilot.
Table 7.3: colonoscopy results for all participants
No cancers or adenoma
Diminutive adenoma
Small adenoma
Advanced adenoma
Cancer suspected at colonoscopy
Total
Mackay 637 34 23 105 35 834Melbourne 346 12 8 50 18 434Adelaide 451 11 8 40 16 526Total 1,434 57 39 195 69 1,794
Source: AIHW (2004)
7.3 Observations on Pilot operations Education and awareness
In general, specialists considered that the information packs and on-site presentations from the State Health Departments provided adequate background information. There were mixed views on the extent of use, and usefulness, of the Pilot helpline. Some commented that the helpline was useful to check whether a particular person was involved in the Pilot.
GP referral process
It was suggested that GP referral for follow-up colonoscopy forms should be electronic, preferably with downloaded information on a participant’s medication history and medical conditions. This system was used successfully in the Mackay site, where GPs could download this information from their existing practice software for inclusion in the referral for follow-up colonoscopy. This information also assisted the colonoscopy service in undertaking an initial triage of participants for follow-up colonoscopy. The downloaded data included the participant’s and GP’s contact details, which assisted in contacting them if the participant did not present for follow-up colonoscopy.
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Managing follow-up colonoscopy demand
Follow-up colonoscopy services for the Pilot were provided in both public and private facilities. The useful role that nurse coordinators can fulfil as the link between GPs, patients and facilities was highlighted at some colonoscopy services, where a dedicated Pilot nurse coordinator was employed to oversee the management of colonoscopy services for Pilot participants. In the Mackay and Victorian Pilot sites, nurse coordinators were employed to receive referrals, undertake pre-procedure assessment, coordinate the colonoscopy, undertake post procedure follow up and ensure completion of data collection. This role was seen as integral to the success of the Pilot at those sites. Discussions with specialists at Austin Health, a major teaching hospital in close proximity to the Victorian Pilot site, highly recommended using a dedicated nurse coordinator to manage this process. Austin Health specialists commented that it took some time to determine the exact nature of demand generated by the Pilot, noting that ‘it started reasonably quietly, and then got progressively busier.’ On average they estimated that follow-up colonoscopy demand was an additional 20 patients per week. This created significant workload in relation to scheduling visits and the reporting requirements for the Pilot. The nurse coordinator would flag those patients who were Pilot participants and schedule their visits in accordance with contractual agreement with DHS Victoria to provide follow-up colonoscopy within three weeks.25 The nurse coordinator commented that often they would need to follow up on incomplete information and field enquiries from GPs, for example in relation to expected waiting times, and from Pilot participants, for example in relation to colonoscopy procedures. The nurse coordinator suggested including patient and GP contact details on the referral form to facilitate this process. Similar observations were made by the nurse coordinator at the Mackay site. Some colonoscopy services used a pre-admission clinic prior to providing colonoscopy for Pilot participants. For example, at Austin Health, Pilot participants were seen in existing general gastroenterology out-patient clinic. The Pilot nurse coordinator would book patients for attendance at the clinic one week prior to colonoscopy. Pilot participants received information on colonoscopy and a clinician would brief them on the procedure. Colonoscopies were then performed in either the hospital’s day centre or operating theatre. It was agreed that integrating non-Pilot patients and Pilot participants within one clinic probably contributed to the increased waiting times in general. Austin Health managed Pilot colonoscopy demand around its existing demand, that is they used their standard lists, which had an impact on overall patient waiting times. At peak periods, with up to 30 new referrals per week, they estimated that waiting times increased to 3-4 weeks, from the usual 1-2 weeks. Separating Pilot participants from non-Pilot colonoscopy patients would have allowed timely service provision. Some colonoscopists suggested that a dedicated clinic for Pilot participants would be simpler to organise. A comment was also made that any increases in demand from a bowel cancer screening program could be at least partially off-set if there was a greater adherence to the NHMRC guidelines for the referral of patients to colonoscopy.
25 DHS Victoria has a contract with Austin Health, and a number of other public hospitals in the vicinity of the Pilot to
provide colonoscopy services to the Pilot participants (see section 7.6 below for more detailed discussion).
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Specialists stated that the post-colonoscopy process could be better managed. For example, they suggested that there could be a post-procedural visit for participants who had any abnormalities detected at colonoscopy.
Histopathology processing
Colonoscopists submitted pathology tissue samples and received pathology results in the usual manner for their colonoscopy service. There were no reported problems with waiting times for histopathology processing.
Reporting requirements
The reporting requirements appeared adequate, albeit resulting in increased paperwork. Feedback suggests that around half of all specialists’ forms were completed in the endoscopy area, with the other half completed later, often by the Pilot nurse coordinator. Some commented that it was often necessary to obtain further information from the participant’s GP to meet the reporting requirements of Pilot forms. In relation to the histopathology processing, there were inadequate processes in place to track tissue samples for Pilot participants. Pathologists should have sent a copy of the histopathology report to the Register but often failed to do so. Some GPs were concerned that they did not always receive their patient’s colonoscopy results. For example, some colonoscopy services issued histopathology results to the participant, who was then supposed to take them to their GP. However participants did not always present the report to their GP, either through patients forgetting or not having a designated GP. As a result, some GPs did not receive their patient’s histopathology results. Specialists considered that, where possible, colonoscopy and histopathology reports should be electronically generated and automatically transferred to the Register and to GPs.
7.4 Views on workforce impacts Workforce capacity should be considered in the context of FOBT positivity rates. The National Specialist Workshop expressed concern that positivity rates above 4% would require extra workforce capacity to meet demand. The experience of the Pilot sites, with observed FOBT positivity rates significantly above 4%, demonstrated that demand could be met, albeit with an increase in workload and waiting times. The Mackay site reported a similar increase in workload. This highlights the importance of introducing effective demand management arrangements, such as dedicated nurse coordinator models and pre-admission clinics, to assist the flow of activity to follow-up colonoscopy services. There was no apparent impact on histopathology processing workload or on endoscopy nurses’ day-to-day work. Similarly, there was not a significant impact on surgical services at Austin Health.
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7.5 Quality assurance of follow-up colonoscopy Proportion of participants proceeding to colonoscopy
The proportion of people proceeding to colonoscopy following referral by a GP across the three Pilot sites was 65.1%. The proportion of people proceeding to colonoscopy did not differ significantly between Adelaide (54.0%) and Melbourne (58.8%) but both were significantly lower than Mackay (87.1%, p < 0.0001). This is likely to be largely due to problems with data collection and transfer. The Mackay site, as a discrete regional area and smaller population, was better able to contain referrals within the region. This was assisted by the contracting of both public and private providers to undertake follow-up colonoscopies for the Pilot. There was also a nurse coordinator at this site, actively following up on unreported data as required, so the collection of colonoscopy data was relatively efficient and easier than at the other sites. The Adelaide and Melbourne sites were small areas within larger cities with a greater range of potential colonoscopy providers, not all of whom may have been aware of the need to provide data on Pilot follow-up colonoscopies. Hence part of the difference in the recorded colonoscopy participation rates between Mackay and the other two sites may be due to follow-up colonoscopy data for participants in Melbourne and Adelaide being unreported (AIHW 2004). It was not possible to detect whether the observed lower rates in Adelaide and Melbourne were due to: patients not attending for colonoscopy; colonoscopies being completed outside the Pilot areas and therefore going undetected in terms of Register data collection; colonoscopies still to be undertaken at the time of the overall evaluation; failure of follow-up colonoscopy services to provide data to the Register; or reporting failures in data transfers to HIC and/or from HIC to AIHW. At some colonoscopy services there were processes in place to follow-up patients who had been referred for colonoscopy but had not presented to the colonoscopy service. One example cited was that GPs would fax through their referral form and, in cases where the patient did not present, they would call the patient directly. Another service commented that they kept a database of GP referrals to ensure that those participants referred for follow-up colonoscopy presented at the service.
Follow-up colonoscopy waiting times
Figure 7.1 shows the proportion of colonoscopies performed over time, following referral for colonoscopy by GPs. The waiting time from GP consultation to follow-up colonoscopy for Pilot participants was discussed in Chapter 6. The data showed that the median waiting time between the GP consultation and a colonoscopy occurring (where there was a positive FOBT) was 30 days.
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Figure 7.1: Colonoscopy follow-up by weeks since GP referral, by Pilot Site
2 6 10 14 18 22 26 30 34 38 42 46 50 54 58 62 66 70 74 78 820
10
20
30
40
50
60
70
80
90
100
Weeks since GP referral
a.Mackay
b.Adelaide
c.Melbourne
All sites
Colonoscopy participation (per cent)
Source: AIHW (2004)
Visualisation of the whole colon
One of the quality indicators for colonoscopy is visualisation of the whole colon. A colonoscopy is taken to have visualised the whole colon if the depth of insertion is recorded as reaching the caecum. The proportion of Pilot colonoscopies recorded in the Register that visualised the whole colon is shown in Table 7.4 below.
Table 7.4: Visualised whole colon (rate per 100 colonoscopies) Age Groups Males Females 55–59 98.7 96.0 60–64 98.0 96.7 65–69 97.3 92.9 70–74 95.3 91.1 Total 97.3 94.2 Age Standardised Rate 97.5 94.5 95% Confidence Interval 91.0-104.3 88.0-101.3
Source: AIHW (2004) There were insufficient numbers of Pilot colonoscopies classified as not visualising the whole colon to allow comparisons between Pilot sites. The proportion of colonoscopies that did not successfully visualise the whole colon increased significantly with age and was lower for males (2.7%) than females (5.8%, p = 0.0008).
Adequacy of colonoscopy
A colonoscopy was defined as ‘adequate’ in cases where the proceduralist was confident that all polyps had been removed. The number of adequate colonoscopies is shown in Table 7.5.
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Table 7.5: Number of adequate colonoscopies (rate per 100 colonoscopies) Age Groups Males Females 55–59 95.8 91.3 60–64 87.2 89.2 65–69 82.7 91.4 70–74 81.5 83.0 Total 86.9 88.8 Age Standardised Rate 87.8 89.1 95% Confidence Interval 81.7–94.4 82.9–95.6 Source: AIHW (2004)
The data indicates that the proportion of colonoscopies identified as adequate decreased significantly with age (p < 0.0001), however, did not differ significantly for any other factor.
Adenoma detection rate
The Pilot data indicated a total of 69 suspected cancers and 195 advanced adenomas. However, these findings should be seen as minimum outcomes of the Pilot, in light of the data collection issues for follow-up colonoscopy and histopathology discussed above.
Further quality indicators
Data on a number of other quality indicators were collected during the Pilot. Detailed analysis of the data (where available and complete) relating to these indicators is yet to be undertaken. One example of this is the time taken for the withdrawal phase of the examination. The United States Multi-Society Taskforce on Colorectal Cancer has suggested a standard of withdrawal time of an average of at least 6 to 10 minutes to ensure that care has been taken to thoroughly inspect the large bowel for abnormalities.
7.6 Follow-up colonoscopy funding arrangements There were different funding arrangements for Pilot follow-up colonoscopies services in each of the States. For the Queensland Pilot Site, the Australian Government agreed to fund all colonoscopies provided to Pilot participants, with funding provided to Queensland Health at the AN-DRG rate. Queensland Health managed the service agreements with the public and private hospitals and monitored performance indicators, which included waiting times, data collection and data transfer to the Register and quality assurance standards. Funding for the private hospital in the Queensland Pilot Site was provided retrospectively on the basis of actual cases presented in monthly reports. Funding for the public sector was provided up-front, with adjustments in line with usual funding allocations. In Victoria the State Government funded all colonoscopies in public hospitals through ‘preferred provider public hospitals’, which were selected by obtaining expressions of interest. There was a specific agreement with selected hospitals for the management of Pilot participants and extra funding was provided by the Victorian Government. The list of preferred providers was distributed to GPs involved in the Pilot.
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These hospitals received up-front funding for colonoscopies. The Department of Human Services would track the number of colonoscopies undertaken by monitoring the data collected by the Register and the numbers of colonoscopies reported by the hospitals, and amending funding as required each quarter. Each hospital was funded $1,000 per colonoscopy which included the colonoscopy, pre colonoscopy consultation, a nurse coordinator who coordinated the colonoscopy process for the Pilot participants and histopathology. There was a specific agreement with the hospital for management of Pilot participants and extra funding was provided to the public hospital for the Pilot by the Victorian Government. Patients with private health insurance that presented at public hospitals were treated in the same manner as those patients without Private Health Insurance. Pilot participants who presented at private hospitals were required to cover any gap payment. In South Australia colonoscopy provision was funded by the Australian Government through a contract with the South Australian Department of Health. The SA Department of Health arranged for the provision of follow-up colonoscopies and associated procedures directly through public hospital colonoscopy service providers, with payment based on the South Australian DRG rate for colonoscopies. Funding was contingent on reporting against performance indicators that included waiting times, data collection and data transfer to the Register and quality assurance standards. Participants who chose to have their follow-up colonoscopy in the private sector could choose a colonoscopy facility and provide and receive a Medicare rebate with remaining costs covered by private health insurance (if held) and patient co-payment. Where funding was provided for follow-up colonoscopies, some services raised concerns that only the colonoscopy procedure was funded. There was no additional funding for follow-up data collection or for providing a pre-admission clinic. There could also be capital implications of significantly increasing the number of colonoscopies that some services provide. Services argued that these areas needed to be adequately funded. It was also raised that in some cases where there were complications with follow-up colonoscopy, participants would need to stay overnight at the facility. This was presented as a particular area of concern for rural and remote facilities, where there was potential lack of access.
Areas for possible further work • Further analysis of the quality indicators on colonoscopy collected through the Pilot,
including the implications for a national bowel cancer screening program.
• Consider the possible role of nurses or other allied health professionals as central coordinators, to facilitate colonoscopy pre-admission clinics and progression of participants across the screening pathway. This may improve data collection across the pathway.
• Investigate options for a post-procedure visit or other mechanism to discuss findings and better assess possible complications post colonoscopy.
• Identify opportunities to better link the colonoscopy and related histopathology outcomes and to return results to the Register, the colonoscopist and the referring GP.
• Amend forms used for collecting colonoscopy and histopathology information in response to feedback from clinicians and health care providers involved in the Pilot, with a view to improving their usefulness and improving the return of information to the Register.
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• Explore use of electronic referral from GPs to colonoscopy providers, noting that this could take some time to implement.
• Assess the impact of a bowel cancer screening program on the specialist workforce. At the same time consider options for training, particularly accelerated training for colonoscopists.
• Engage with professional bodies and Colleges to establish quality standards for colonoscopy and for associated histopathology. Explore possible associated accreditation mechanisms.
• Determine how to communicate with the target population about the potential risks of colonoscopy.
• Examine options for the collection of information on complications from colonoscopy to assess the consequences for participations and to inform evaluation of a national bowel cancer screening program.
• Explore costing models to support colonoscopy for follow-up of positive of FOBTs. For example: the impact of co-payments on colonoscopy rates; only providing Medicare rebates where a proceduralist is accredited; determining the net cost of follow-up colonoscopies, taking into account likely displacement of quasi-screening already occurring.
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8
Pilot governance, quality and organisation issues
Key evaluation findings
• There were a range of stakeholders providing policy advice and developing and actioning implementation plans for the Pilot, including the Department of Health and Ageing, State Health Departments, Divisions of General Practice, Cancer Councils, independent experts, medical colleges and consumers.
• An Implementation Committee and associated Task Groups performed an important role in the initial design phases of the Pilot.
• State Health Departments played an important role in coordinating Pilot activities and developing and implementing community mobilisation strategies.
• Divisions of General Practice played a key role in developing and implementing GP education and communication strategies.
• Pilot site implementation plans were coordinated through local implementation and advisory committees that met regularly throughout the Pilot.
• The Pilot struck an appropriate balance between the requirements of a cross-State screening program for centrally determined and standardised processes and locally developed mobilisation and communication strategies.
• Quarterly monitoring reports were produced by the AIHW against key indicators. • The examination of organisation arrangements for the Pilot found that the roles
performed by each of the parties in the Pilot were appropriate.
8.1 Pilot governance and infrastructure 26 Throughout the Pilot there were a range of stakeholders providing policy advice and developing and actioning implementation plans at a program and Pilot site level. These included the Department and, in the three States where the Pilot sites operated, Departments of Health, Divisions of General Practice, and Cancer Councils. There were also specialist advisory and steering committees established, including the Implementation Committee, Task Groups and local implementation committees. The roles performed by each of these stakeholders is summarised below.
26 For ease of comprehension in this chapter, where there is a reference to the Department/DoHA, this refers to the
Australian Government Department of Health and Ageing. The Victorian Department of Human Services is referred to as DHS, the South Australian Department of Human Services and Health (DHSH) and the Department of Health in Queensland is referred to as Queensland Health.
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The Department of Health and Ageing
The Pilot was managed through the Screening Section within the Australian Government Department of Health and Ageing (DoHA), which was responsible for providing program management of the Pilot including secretariat and administrative support. The Pilot was implemented in three broad, partially overlapping, phases. Illustrative tasks undertaken by the Department in the three phases are summarised below. (1) Phase 1: Infrastructure development (May 2000 to April 2003). Specific tasks in
this phase included:
• development of the Pilot implementation plan and accompanying Ministerial announcement;
• formulation of a risk management plan; • establishment of the Implementation Advisory Committee and Quality, Policy,
Communication and Education and Monitoring and Evaluation Groups; • specification of the business requirements of the Pilot Register, enabling the HIC to
build the Register; • development of the Register agreement between DoHA and HIC; • selection and announcement of the Pilot sites; • development and market testing of communication and education materials for the
target population, GPs and specialists; • tender and selection process for FOBTs and pathology analysis used in the Pilot;
and • negotiation of funding and service agreements with the States and Divisions of
General Practice involved in the Pilot. (2) Phase 2: Implementation of screening (November 2002 to June 2004). The first
invitations to participate in bowel cancer screening through the Pilot were issued to Mackay residents of the target age in November 2002. Final invitations for new participants in all Pilot sites were sent in June 2004. Specific tasks for the Department in the implementation phase included:
• issues monitoring and refinement of Pilot protocols; • ordering FOBTs from the two FOBT suppliers; • finalising the contracts for FOBT pathology analysis; • clarification of opt-off arrangements, privacy and duty of care issues; and • translation of communication and education materials into other languages.
(3) Phase 3: Evaluation (mid 2002 to November 2004). The Bowel Cancer Screening
Pilot Monitoring and Evaluation Task Group completed its specification of the Pilot evaluation requirements in March 2004. Specific evaluation tasks facilitated by the Department were:
• commissioning external Pilot evaluation projects and consultancies; • monitoring Pilot site implementation arrangements, including workshops with sites; • review and circulation of amended forms, based on initial Pilot findings; • development and review of AIHW quarterly monitoring reports; • workshop on workforce and quality issues in colonoscopy; and • workshop on GP issues from the Pilot.
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Expert advisory arrangements
The Department worked with experts, other organisations and advisory groups in the design and implementation of the Pilot. The Implementation Committee was established in April 2001 to provide advice on specific policy, quality, communication and education, and monitoring and evaluation aspects of the Pilot. The Implementation Committee also had a series of Task Groups comprised of experts from a broad range of disciplines including epidemiology, gastroenterology, health economics, statistics, and representatives from relevant medical colleges, peak cancer bodies and consumers. Work undertaken by the Implementation Committee and its Task Groups included the development of:
• an evidence based screening pathway; • criteria to assist with the selection of Pilot sites; • key policy parameters, including target population age range, screening interval, and type
of FOBT; • centralised, national, screening Register arrangements to manage the invitation and recall
of the target population for screening, and monitoring activities; • communication and education materials for encouraging the target population and health
professionals to participate in the Pilot; • quality protocols to operate across the screening pathway; and • a monitoring and evaluation framework for the Pilot (Department of Health and Ageing
September 2003). Groups established were: • Implementation Committee and Executive Committee; • Policy Taskgroup; • Quality Taskgroup (QTG); • Communication and Education Taskgroup; • Monitoring and Evaluation Taskgroup (METG); and • Indigenous Taskgroup. A Monitoring and Evaluation Steering Committee (MESC) was also established in June 2004 to oversee the evaluation of the Pilot.27
State Health Departments
The Department liaised with State Health Departments on the provision of funding for follow-up colonoscopies needed as a result of the Pilot screening processes. The State Health Departments were also funded to coordinate community mobilisation and managing the relationship between the State funded hospital system and private sector providers in the Pilot sites:
27 The membership of the Implementation Committee, Taskgroups and MESC are at Appendix B.
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(1) In South Australia the then Department of Human Services (DHS), now the Department
of Health established, serviced and chaired a broadly based Bowel Cancer Screening Pilot Program Implementation Committee which oversaw all aspects of the Pilot in South Australia. The SA DHS Pilot Coordinator implemented and ran the activities of the SA Pilot Community Mobilisation Strategy, in association with the Cancer Council SA and the GP Mobilisation coordinators from the Southern and Western Divisions of General Practice. In addition to regular informal ad hoc interactions, a small Community Mobilisation Strategy Advisory Committee was established with members from DHS, the Cancer Council and the GP Divisions to maximise synergy of activities. This met ‘as required’ or about every two months. A separately funded General Practitioner Mobilisation Strategy was developed between the Adelaide Southern and Western Divisions of General Practice and the Australian Government. On implementation of this strategy, a medical general practitioner and nurse coordinator were appointed to run this program. Every 6-8 weeks, they and others in the Southern and Western GP Divisions met to discuss practical operational issues about how to inform and mobilise General Practitioners in the Pilot areas. However, this group primarily reported to the SA Implementation Committee so that their activities could be coordinated effectively with all the other strategic and operational work of the SA Pilot.
(2) In Queensland, the Cancer Screening Services Unit (CSSU), Public Health Services Branch, Queensland Health, provided State level coordination of the Pilot and established a Quality Management Committee to provide expert advice on implementation issues. CSSU developed and negotiated the contracts with the public and private sector hospitals in Mackay to provide follow-up colonoscopies for the Pilot participants. The follow-up colonoscopies were additional to existing services and were provided free of cost in the public or private sector. The contracts with the service providers included quality standards, including a maximum 30 day waiting time.
The community mobilisation strategies developed for the Pilot were implemented locally through Community Health Services, Mackay Health Service District. The health promotion officer employed for the Pilot worked closely with the Mackay Division of General Practice that took the lead in Pilot education and support. The locally based Mackay Implementation Committee provided coordinated and monitored the operation of the Pilot in Mackay.
(3) In Victoria, coordination activities were undertaken by the Prevention and Perinatal
Health Section, Disease Control and Research Branch of Public Health, Victorian Department of Human Services (DHS). DHS chaired an Advisory Committee for the Pilot. The DHS Victoria allocated resources to the Cancer Council of Victoria to develop the community education strategy.
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State Cancer Councils
In Queensland the community mobilisation strategy was managed by Queensland Health, Mackay Health Service District, in conjunction with the Mackay Division of General Practice. The role of the Queensland Cancer Fund was purely a liaison role, to provide support where possible. For example, provision of resources for displays at shopping centres, and the provision of information on cancer and related issues through their established support services. The Victorian Department of Human Services delegated responsibility for the formulation and implementation of the Pilot community mobilisation strategies to the Cancer Council Victoria. In South Australia, the DHS worked with the Cancer Council Victoria (CCV) on the refinement and delivery of the community mobilisation strategy. These strategies were based on the Cancer Councils’ pre-existing networks with community groups, Aboriginal organisations, multicultural groups, health care providers and local government. The Victorian and South Australian State Cancer Councils and the Queensland Cancer Fund all had pre-existing counselling services where patients could talk to trained staff about their concerns regarding cancer and its impacts. Counselling staff employed by the Cancer Councils also send written information and contact details of relevant services in the area where an inquirer lives, including details of Familial Cancer Clinics, Genetic Services and Hereditary Bowel Cancer Registries. These services were available to the Pilot target population.
Divisions of General Practice
GP education and ongoing communication with them on Pilot operations was critical because of their central role in maintaining links between the target population and participants, the Register and specialists. DoHA funded the Divisions in each Pilot site to develop and implement GP education and communication strategies. This included a project worker who was responsible for managing communication with GPs as well as organising local publicity. The Divisions also contributed to the development of community mobilisation strategies.
Local Pilot site governance arrangements
Local implementation committees were formed in each Pilot site. These committees included representatives from the local Division(s), State Health Department, DoHA, State Cancer Councils, GPs, consumer representatives, universities, and expert advisors. These committees met approximately every six to eight weeks. They provided:
• cross membership with the Implementation Committee and its Task Groups; • advice on local issues which impacted on Pilot policies and procedures and their
implementation; • support for communication and education of health professionals and the target
population; and • infrastructure for the delivery of community mobilisation strategies within the Pilot sites.
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(1) Mackay: The Mackay Implementation Committee met every month and had around 12
representatives from:
• Mackay Division of General Practice; • Cancer Screening Services Unit, Queensland Health; • Mackay Health Service District; • Queensland State office representative from DoHA; • Queensland Cancer Fund; • consumer representatives; • Community Health service; • GPs; • Mackay Base Hospital; and • Mackay Mater Hospital.
(2) Adelaide: The South Australian implementation committee met monthly from
inception in 2002 until 2004, when meetings were held every two months. The last meeting was held in August 2004. It included representation from: • consumers; • relevant divisions of general practice (SA peak body and the Southern and Western
Divisions of General Practice; • relevant medical specialists (gastroenterology, surgery, pathology and genetics); • bowel cancer researchers; • Pharmacy; • other screening programs; • The Cancer Council South Australia; • The Australian Government; and • The South Australian Government.
(3) Melbourne: In Melbourne there was a Steering Committee that met on a quarterly basis. It was chaired by DHS Victoria. The other participants were:
• North East Valley Division of General Practice; • regional office representatives of DoHA; • The Cancer Council Victoria; and • specialists.
During the initial implementation of the Pilot the Melbourne site also held monthly meetings between the North East Valley Division and the Cancer Council Victoria.
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Summary of Pilot governance arrangements
Based on the discussion provided in Section 8.1 above, it is possible to summarise the overall governance structures for the Pilot as shown in Figure 8.1.
Figure 8.1 shows that the Pilot governance structure balanced the use of centrally determined and standardised processes with locally developed and implemented mobilisation and communication strategies.
8.2 Community mobilisation and GP engagement strategies: an overview Each State Health Department and Divisions of General Practice prepared quarterly reports on their activities for DoHA. Summaries of the community mobilisation and GP education and communication strategies for each Pilot site are provided in Table 8.1 (community mobilisation) and Table 8.2 (GP education and communication). These activity summaries highlight the diversity of locally based strategies for mobilisation and communication. This diversity was needed to cater for Pilot site variations in:
• local community population composition, for example the different socio-economic mix across sites and the number of people from culturally and linguistically diverse backgrounds;
• local media and other communication networks; • knowledge and strategies about how best to engage with different groups at a local level; • primary care service provision networks; • the relationship between primary care providers and the tertiary service provision system; • level of engagement of GPs with the Divisions in their area; • State funding systems for tertiary care services; and • how State Health Departments related to local service provision networks.
Figure 8.1: Pilot governance structures
DOHA
State Departments x3
Local Pilot Implementation Committee
ImplementationCommitte
Pilot Sites x 3
Divisions of GPs x 4
Task Group x 4 - monitoring- quality - policy- Communication &
education Funding and ServiceAgreements
Funding and Service
Agreements
Funding and Service Agreements
Colonoscopy service providers x 2
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Joint meetings held in May and December 2003 provided the Pilot sites with opportunities to share learnings. For instance, as a result of these discussions:
• the electronic versions of GP Assessment forms, developed at the Mackay site, were made available to the Adelaide and Melbourne sites; and
• the Divisions coordinated the identification of local evaluation findings about how GPs had responded to the Pilot’s operations.
Table 8.1: Summary of Pilot site community mobilisation activities
Adelaide Mackay Melbourne
• ABC Radio 891 interview with State Minister on the Pilot.
• DGP liaison with nursing home staff to advise of the Pilot.
• Divisions contacted Aboriginal liaison workers at Queen Elizabeth and Royal Adelaide Hospitals.
• Divisions staff interviewed on Aboriginal community radio.
• Public seminar in Woodville Town Hall. • Collaborative information evening by GPs
and pharmacists for Asian residents. • GP advisor visited the Migrant Health
Service practice nurse. • Presentations to Indigenous elders. • GP advisor met with health workers at
Nukuwurrin Yunti to inform them about the Pilot.
• Pilot poster and materials distributed to Nukuwurrin Yunti, Kura Yerlo Council and SA Cervix Screen Aboriginal Project Officer.
• Attendance at the Health Day for Aboriginal people.
• Attendance at Family Doctor Week/ displays at Arndale and West Lakes shopping centres.
• Visits to neighbourhood development officers to provide demonstration kits and Pilot information.
• Consultations with organisations supporting people with disabilities eg Minda Inc and Intellectual Disabilities Services Council.
• Community Update on the Pilot published in mainstream local papers, The Guardian and Weekly Times.
• Pilot displays in local libraries. • Displays in shopping centres and sporting
clubs (eg Glenelg and Grange Golf Clubs) • Community event supported by Divisions,
hospitals and CC SA, advertised in local newspapers, GP surgeries, pharmacies – attended by 40 people.
• Cancer Council of SA conducted: • three cancer screening talks • registered calls on the Cancer Help
Line • community meetings using the CC
SA Multicultural worker.
• Launch of Pilot at Healthy Lifestyle expo in shopping centre.
• Media campaign in local newspaper (inserts in Daily Mercury), newsletters targeting 55-74 year olds (eg Mackay Diabetes Newsletter, Community Service Scheme Newsletter, Rotary Club Bulletins, Mackay 50 and Better Programme Newsletter, Talk About Women Newsletter, The Hibiscus Herald, Mackay Cane Growers newsletter, Keeping In Touch home carers newsletter ), local Mackay television network (eg community service announcements), and local ethnic media (eg Community Settlement Services Scheme newsletter).
• Displays at Mackay Entertainment Centre, Mackay Show, Grass Tree Beach Progress Association Garage Sale, U3A (Mackay) ‘Give It a Go’ day, Mackay City and Gordon White libraries, Canegrowers for International Women’s Day; shopping centres.
• Development of media / communication plan on strategies to target Aboriginal and Torres Strait Islander peoples (eg Koori Mail, YumiMeta Newsletter), South Sea Islanders (HACC ‘N’ South Sea Islander Style newsletter), people from culturally and linguistically diverse backgrounds (eg advertisement in Migrant Voice).
• Mackay Health Promotion officer liaised with local indigenous and culturally and linguistically diverse groups regarding the Pilot.
• Queensland Health clinical nurse consultant dealt with calls seeking advice on clinical issues.
• Demonstration of FOBT kits at meetings with local organisations.
• Pilot posters distributed to Aboriginal counsellors in secondary schools.
• Community education sessions. • NAIDOC Day display, Queens Park. • Advertising in Mackay Hotel lavatory
cubicles.
• Contact with local service providers to discuss the Pilot, including multicultural organisations, local councils, health care providers eg community health services, Royal District Nursing Service, neighbourhood house network, private personal care organisations, primary care partnerships, Aboriginal liaison service.
• Media strategy targeting print and radio, including a Pilot launch, media releases, community listings, advertisements, specific media releases for ethnic media, and radio interviews on SBS, editorial contact for local newspapers.
• Mail outs to multicultural community groups, community organisations (eg Rotary, RSL, and Lions clubs), churches.
• Information sheets translated into Arabic, Chinese, Croatian, Greek, Italian and Macedonian and distributed to group leaders.
• Development of material to assist educators with promotional activities.
• Promotion of Pilot at community festivals eg Chinese New Year, Greek Community Festival.
• In-service training for bilingual health educators.
• 18 education sessions delivered via trained bilingual health educators.
• Displays in local shopping centres throughout the Pilot catchment area.
• Training for nurse counsellors staffing the Cancer Helpline (Cancer Information and Support Service) – 474 calls to helpline regarding the Pilot in 3 months to August 2003, following launch.
• Evaluation of community initiatives to assess their impact on participant behaviour over the period of the Pilot’s operation.
Source: Division and State quarterly progress reports
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Table 8.2: Summary of Pilot site GP education and communication strategies Adelaide Mackay Melbourne
• Access database constructed to record GP details and all activity related to the Pilot: practice visits, kit delivery and phone enquiries.
• Practice visits by DGP program staff. • Follow-up phone calls to all practices. • Pilot posters sent to all GPs in catchment
postcodes. • GPs advised they could access Medical
Director and Spectrum electronic forms from the Division websites.
• Developed laminated bookmark for GPs with contact details for the National helpline, website and local program staff.
• GP resource kits also delivered to GPs outside the catchment area (Adelaide CBD) as some Pilot participants attended GPs outside the Pilot areas.
• GP focus groups on the Pilot to discuss the AIHW monitoring reports.
• Presentations to West Lakes Mall Walkers Group.
• Divisional newsletters, Western GP and Newsdesk, contained regular articles on the Pilot.
• Information on the Pilot included on the Division websites.
• Updates on the Pilot in the SCOOP newsletter.
• Aboriginal posters sent to community centres and GPs.
• Presentation to Sturt Fleurieau GP registrars.
• GP advisor liaised with specialists known to treat patients from the Pilot catchment area.
• Fliers to GPs advising them of public meeting on the Pilot.
• DHS SA contacted colorectal specialists and Divisional staff then assisted with the delivery of specialist kits.
• GP CPD meeting on bowel cancer (virtual colonoscopy, bowel cancer screening, and familial bowel cancer).
• Development of information packs specific for practices and liaison with practices to advise of CPD evening.
• Developed electronic templates for referral forms.
• Met with local service providers (specialist and GPs) to ensure they understood the clinical pathway.
• Media releases on GP participation. • Poster for GP surgeries on importance
of bowel cancer screening and GP role. • Dissemination of GP Pilot resource
kits. • Visits to GP practices. • Conduct of GP forums on the Pilot. • Conduct of orientation workshop on the
Pilot, which included participation by GPs, specialists, nursing and medical staff from the local hospital.
• Design of after hours and emergency department pathway for Pilot presentations.
• Presentation by Division to Nursing Oncology Group at the Blue Care Centre.
• Collaborative in-service session for day procedures unit to registrars and specialists at Mackay Base Hospital.
• Liaison with Mackay Community Health Service.
• Operation of telephone help desk by Division facilitator.
• Updates on the Pilot in the Whitsunday Passages GP newsletter.
• Discussions with Mackay Aboriginal Medical Services Board to discuss allocation of Pilot funds for Aboriginal Health Workers.
• Practice visit program to explain the Pilot objectives and procedures.
• CPD sessions on bowel cancer, approved by the RACGP.
• Distribution of stickers with key contact numbers and information pamphlets on Cancer Multilingual Information lines and Familial Cancer Centres.
• Distribution of demonstration kits to GPs to assist in explaining kit usage to patient consulting them on participation in the Pilot.
• Helpline for GPs and practice staff for queries about the Pilot and the procedures involved, including dealing with: o out of area GP queries; o use of GP assessment forms; o clinical questions about the
suitability of patients to participate;
o FOBTs for people not eligible to participate;
o clarification about colonoscopy services;
o requests for additional blank reporting forms.
• Manage queries from colonoscopy services clarifying issues relating to form completion.
• Monthly news update to all Divisional GPs and all surrounding Divisions addressing issues of concern identified in the practice visits eg ‘Management of Patients with Family History’.
• Advice to GPs of anticipated workload as a result of Register invitation process.
• Training sessions for GPs on specialist topics eg use of a CCV resource manual on familial bowel cancer.
• Distribution of the Pilot poster to practices within the Division.
• Aboriginal Liaison Officer employed by the Division.
• Distribution of specially developed Indigenous posters, ‘Hey Aunty and Uncle’.
• GP presentation to patients at Aboriginal Elders nursing home.
• Coordination of local Pilot site GP evaluation strategy.
Source: Division and State quarterly progress reports
101
8.3 Quality assurance The Quality Task Group (QTG) which reported to the Implementation Committee was responsible for providing advice on a range of quality issues associated with the Pilot design, including:
• developing quality assurance protocols across the screening pathway; • developing mechanisms to measure performance against quality standards during the
Pilot; • advising on accreditation, training, reporting and quality assurance arrangements for
services and service providers; and • advising on workforce and infrastructure capacity for the Pilot. The QTG considered a number of quality assurance issues in detail, such as:
• provision of advice to the Department on the Statement of Requirement (specifications) for the purchase of FOBTs and their pathology analysis used in the Pilot;
• the delivery of high quality colonoscopy to Pilot participants, including examination of a framework for quality measurement in relation to: - colonoscopists; - colonoscopy procedures - colonoscopy facilities;28 and
• examination of pathology processes. It was noted that there was no national standard for colorectal cancer staging, the reporting styles of histopathologists varied considerably, and there was no quality assurance process for examination of the histopathology of bowel cancer specimens.
QTG members advised on the preparation of draft standardised reporting forms for GP assessment, colonoscopy and procedures, and histopathology. These reports were also considered at a specialist workshop in 2002, and made available to the Royal College of Pathologists of Australasia (RCPA) and placed on the College’s website for comment by RCPA members. The final versions of these forms were included in the Pilot resource kits prepared for GPs and specialists. The Monitoring and Evaluation Task Group (METG) developed a suite of Pilot activity indicators. These indicators were routinely analysed by the AIHW using Register data collected via the Pilot forms listed above and other administrative data (eg number of kits sent). The findings of this AIHW analysis were summarised in quarterly reports. The key indicators examined by the AIHW in its quarterly reports were:
• participation by site and by FOBT kit type; • participation rates by no reminder letter/reminder letter; • FOBT results by test type, including correct completion rates, incorrectly completed,
damaged and unsatisfactory tests; • FOBT positivity rates; • GP attendance; • number of referrals for colonoscopy with/without positive FOBT result; • colonoscopy follow up rates; • number of adequate colonoscopies where all polyps were removed; and 28An important guide was Rex (2002).
102
• waiting times between key events in the screening pathway. The QTG did not reconvene after April 2003 so there were limited opportunities for it to assess scope for refinement of Pilot operations based on movements in the quality indicators reports prepared by the AIHW. This was undertaken within DoHA. The Pilot has generated a large amount of new process and clinical data that requires more detailed examination to assist in the design of any national program. During its deliberations the QTG noted that quality processes for the Pilot may be different to those that would be recommended for a national bowel cancer screening program, as the lead-time required for improvement of quality processes can be considerable. The development of quality indicators for the Pilot will assist in informing and facilitating improvements in quality processes across the screening pathway in the longer term. Information collected through the overall evaluation has enabled the preparation of a comprehensive analysis of the overall participation and data incompletion rates along the screening pathway. This information is presented in Figure 8.2 (FOBT received by the Register) and Figure 8.3 (FOBT not yet received by the Register). The system-wide presentation facilitates analysis such as:
• of the FOBTs that were positive (n=2,308), a significant number did not have a GP visit recorded in the Register, but had proceeded to follow-up colonoscopy (n=517);
• where GP visits were recorded and follow-up colonoscopy was referred (n=1,351), the data recorded in the Register suggests that only 911 participants actually presented for follow-up colonoscopy; and
• where GP visits were recorded and follow-up colonoscopy was not referred (n=84), the data suggests that six participants still underwent follow-up colonoscopy.
103
Figu
re 8
.2:
Pilo
t par
ticip
atio
n an
d da
ta in
com
plet
ion
rate
s –
FOB
T re
sult
rece
ived
by
the
Reg
iste
r
Tota
l peo
ple
invi
ted
56,9
07G
P vi
sit p
rior t
o re
ceiv
ing
FOB
T re
sult
121
(0.2
1%)
FOB
T re
ceiv
ed b
y re
gist
er a
nd re
sult
sent
25,8
40 (4
5.41
%)
FOB
T po
sitiv
e2,
308
(4.0
6%)
FOB
T in
conc
lusi
ve32
4 (0
.57%
)
FOB
T ne
gativ
e23
,208
(40.
78%
)
GP
visi
t rec
orde
d1,
435
(2.5
2%)
No
GP
visi
t rec
orde
d87
3 (1
.53%
)G
P vi
sit r
ecor
ded
2,77
2 (4
.87%
)N
o G
P vi
sit r
ecor
ded
20,4
36 (3
5.91
%)
Col
onos
copy
refe
rral
1,35
1 (2
.37%
)
No
colo
nosc
opy
refe
rral
84 (0
.15%
)
Col
onos
copy
refe
rral
828
(1.4
6%) No
colo
nosc
opy
refe
rral
1,94
4 (3
.42%
)
Atte
nd c
olon
osco
py35
6 (0
.63%
)
Not
atte
nd c
olon
osco
py51
7 (0
.91%
)
Atte
nd c
olon
osco
py11
9 (0
.21%
)
Not
atte
nd c
olon
osco
py20
,317
(35.
70%
)
Atte
nd c
olon
osco
py91
1 (1
.60%
)
Not
atte
nd c
olon
osco
py44
0 (0
.77%
)
Atte
nd c
olon
osco
py6
(0.0
1%)
Not
atte
nd c
olon
osco
py78
(0.7
8%)
Atte
nd c
olon
osco
py40
3 (0
.71%
)
Not
atte
nd c
olon
osco
py42
5 (0
.75%
)
Atte
nd c
olon
osco
py3
(0.0
1%)
Not
atte
nd c
olon
osco
py1,
941
(3.4
1%)
Scop
e: 9
11C
ance
r: 45
Adv
ance
d: 1
28Sm
all:
25D
imin
utiv
e: 3
3H
yper
plas
tic: 3
3
Scop
e: 6
Can
cer:
0A
dvan
ced:
0Sm
all:
0D
imin
utiv
e: 0
Hyp
erpl
astic
: 2
Scop
e: 4
03C
ance
r: 2
Adv
ance
d: 1
5Sm
all:
4D
imin
utiv
e: 1
0H
yper
plas
tic: 3
0
Scop
e: 3
56C
ance
r: 22
Adv
ance
d: 5
2Sm
all:
12D
imin
utiv
e: 9
Hyp
erpl
astic
: 13
Scop
e: 3
Can
cer:
0A
dvan
ced:
0Sm
all:
0D
imin
utiv
e: 0
Hyp
erpl
astic
: 1
Scop
e: 1
19C
ance
r: 0
Adv
ance
d: 4
Smal
l: 0
Dim
inut
ive:
8H
yper
plas
tic: 9
Tota
l peo
ple
invi
ted
56,9
07G
P vi
sit p
rior t
o re
ceiv
ing
FOB
T re
sult
121
(0.2
1%)
FOB
T re
ceiv
ed b
y re
gist
er a
nd re
sult
sent
25,8
40 (4
5.41
%)
FOB
T po
sitiv
e2,
308
(4.0
6%)
FOB
T in
conc
lusi
ve32
4 (0
.57%
)
FOB
T ne
gativ
e23
,208
(40.
78%
)
GP
visi
t rec
orde
d1,
435
(2.5
2%)
No
GP
visi
t rec
orde
d87
3 (1
.53%
)G
P vi
sit r
ecor
ded
2,77
2 (4
.87%
)N
o G
P vi
sit r
ecor
ded
20,4
36 (3
5.91
%)
Col
onos
copy
refe
rral
1,35
1 (2
.37%
)
No
colo
nosc
opy
refe
rral
84 (0
.15%
)
Col
onos
copy
refe
rral
828
(1.4
6%) No
colo
nosc
opy
refe
rral
1,94
4 (3
.42%
)
Atte
nd c
olon
osco
py35
6 (0
.63%
)
Not
atte
nd c
olon
osco
py51
7 (0
.91%
)
Atte
nd c
olon
osco
py11
9 (0
.21%
)
Not
atte
nd c
olon
osco
py20
,317
(35.
70%
)
Atte
nd c
olon
osco
py91
1 (1
.60%
)
Not
atte
nd c
olon
osco
py44
0 (0
.77%
)
Atte
nd c
olon
osco
py6
(0.0
1%)
Not
atte
nd c
olon
osco
py78
(0.7
8%)
Atte
nd c
olon
osco
py40
3 (0
.71%
)
Not
atte
nd c
olon
osco
py42
5 (0
.75%
)
Atte
nd c
olon
osco
py3
(0.0
1%)
Not
atte
nd c
olon
osco
py1,
941
(3.4
1%)
Scop
e: 9
11C
ance
r: 45
Adv
ance
d: 1
28Sm
all:
25D
imin
utiv
e: 3
3H
yper
plas
tic: 3
3
Scop
e: 6
Can
cer:
0A
dvan
ced:
0Sm
all:
0D
imin
utiv
e: 0
Hyp
erpl
astic
: 2
Scop
e: 4
03C
ance
r: 2
Adv
ance
d: 1
5Sm
all:
4D
imin
utiv
e: 1
0H
yper
plas
tic: 3
0
Scop
e: 3
56C
ance
r: 22
Adv
ance
d: 5
2Sm
all:
12D
imin
utiv
e: 9
Hyp
erpl
astic
: 13
Scop
e: 3
Can
cer:
0A
dvan
ced:
0Sm
all:
0D
imin
utiv
e: 0
Hyp
erpl
astic
: 1
Scop
e: 1
19C
ance
r: 0
Adv
ance
d: 4
Smal
l: 0
Dim
inut
ive:
8H
yper
plas
tic: 9
104
Figu
re 8
.3:
Pilo
t par
ticip
atio
n an
d da
ta in
com
plet
ion
rate
s –
FOB
T re
sult
not y
et re
ceiv
ed b
y th
e R
egis
ter
FOB
T no
t yet
rece
ived
by
regi
ster
31,0
67 (5
4.59
%)
GP
visi
t rec
orde
d30
(0.0
5%)
No
GP
visi
t rec
orde
d31
,037
(54.
54%
)
Col
onos
copy
refe
rral
7 (0
.01%
)N
o co
lono
scop
y re
ferr
al23
(0.0
4%)To
tal p
eopl
e in
vite
d56
,907
Atte
nd c
olon
osco
py3
(0.0
1%)
Not
atte
nd c
olon
osco
py4
(0.0
1%)
Atte
nd c
olon
osco
py0
(0%
)
Not
atte
nd c
olon
osco
py23
(0.0
4%)
Atte
nd c
olon
osco
py2
(0.0
0%)
Not
atte
nd c
olon
osco
py31
,035
(54.
54%
)
Scop
e: 3
Can
cer:0
Adv
ance
d:0
Smal
l: 0
Dim
inut
ive:
0H
yper
plas
tic:0
Scop
e: 2
Can
cer:0
Adv
ance
d:0
Smal
l: 0
Dim
inut
ive:
0H
yper
plas
tic:0
FOB
T no
t yet
rece
ived
by
regi
ster
31,0
67 (5
4.59
%)
GP
visi
t rec
orde
d30
(0.0
5%)
No
GP
visi
t rec
orde
d31
,037
(54.
54%
)
Col
onos
copy
refe
rral
7 (0
.01%
)N
o co
lono
scop
y re
ferr
al23
(0.0
4%)To
tal p
eopl
e in
vite
d56
,907
Atte
nd c
olon
osco
py3
(0.0
1%)
Not
atte
nd c
olon
osco
py4
(0.0
1%)
Atte
nd c
olon
osco
py0
(0%
)
Not
atte
nd c
olon
osco
py23
(0.0
4%)
Atte
nd c
olon
osco
py2
(0.0
0%)
Not
atte
nd c
olon
osco
py31
,035
(54.
54%
)
Scop
e: 3
Can
cer:0
Adv
ance
d:0
Smal
l: 0
Dim
inut
ive:
0H
yper
plas
tic:0
Scop
e: 2
Can
cer:0
Adv
ance
d:0
Smal
l: 0
Dim
inut
ive:
0H
yper
plas
tic:0
105
This system-wide perspective of the clinical pathway could provide a useful tool for an analysis. For each step of the clinical pathway it will be important to determine whether the perceived data incompletion rate identified in Figures 8.2 and 8.3 is due to:
• service providers’ failure to return reporting paperwork to the Register; • differences in participants’ behaviour once they have entered the screening pathway, for
example failure to attend follow-up colonoscopy post-GP referral; or • differences in clinical outputs and outcomes of the program. The high data incompletion rates at different points of the screening pathway made it difficult to undertake an assessment of the extent to which the duty of care and safety net provisions tested in the Pilot were achieved. For example, it could not be identified whether apparent withdrawals along the screening pathway were due to breaches of duty of care by service providers/the Register or simply a failure to return Pilot reporting forms. The data incompletion rate will be in most part a data collection issue. For example, the data indicates that the proportion of people proceeding to colonoscopy was significantly higher in Mackay than Adelaide or Melbourne. The Mackay site was relatively small and self-contained. Furthermore, there was a nurse coordinator actively following up on unreported data as required, so the collection of more comprehensive colonoscopy data was relatively easier than at the other sites. The Adelaide and Melbourne sites were small areas within larger cities with a greater range of potential colonoscopy providers, not all of whom may have been aware of the need to provide data on Pilot follow-up colonoscopies. Hence part of the difference in the lower recorded colonoscopy participation rates may be due to follow-up colonoscopy data for participants in Melbourne and Adelaide not being reported. It was not possible to detect whether the observed lower rates in Adelaide and Melbourne were due to: patients not attending for colonoscopy; colonoscopies being completed outside the Pilot areas, and therefore going undetected or not being followed up in terms of Register data collection; colonoscopies still to be undertaken at the time of the overall evaluation; failure of follow-up colonoscopy services to provide data to the Register; or reporting failures in data transfers to HIC and/or from HIC to AIHW.
106
8.4 Organisational arrangements Figure 8.4 shows the overall bowel cancer screening service delivery arrangements developed and tested in the Pilot.
Figure 8.4: A summary of the Pilot operations
FOBTproviders * 2
HIC: Register Development &
Operation
Public / Private Hospitals (Patients requiring surgery)
Histopathologists
Colonoscopists
Mail House
Com
plet
ed k
its re
turn
ed v
ia A
ustra
lia P
ost
Kits forwarded for mailout to Pilot invitees
Details of participants with positive FOBTs
Advice on FOBT
Colonoscopy results
Histopathology results
Patients requiring surgery for bowel cancer identified
through Pilot
Histopathology results
Individual GPs
Contract
Referral of patients with positive FOBTs
PathologyService
Contract / Funding and Service Agreement
Participant Invitee
FOBT pathology results
Participant details to HIC
FOBTproviders * 2
HIC: Register Development &
Operation
Public / Private Hospitals (Patients requiring surgery)
Histopathologists
Colonoscopists
Mail House
Com
plet
ed k
its re
turn
ed v
ia A
ustra
lia P
ost
Kits forwarded for mailout to Pilot invitees
Details of participants with positive FOBTs
Advice on FOBT
Colonoscopy results
Histopathology results
Patients requiring surgery for bowel cancer identified
through Pilot
Histopathology results
Individual GPs
Contract
Referral of patients with positive FOBTs
PathologyService
Contract / Funding and Service Agreement
Participant InviteeParticipant InviteeParticipant Invitee
FOBT pathology results
Participant details to HIC
While the diagram suggests that the Pilot organisational arrangements were complex, opportunities for removing major functional elements from the Pilot operations were limited. In particular it was concluded that removing the functions of any single component had the potential to compromise the effectiveness of the Pilot’s operations because:
• engagement between the Australian and State government Health Departments was required to manage the interface between bowel cancer screening and State funded follow-up services;
• there were pre-existing structures in place prior to the Pilot at a State level for the management of general community education and treatment of bowel cancer;
• Divisions of General Practice assumed a key role in mobilising GP resources; and • the infrastructure needs of a screening program that is national in scale should leverage off
the existing service delivery network if its operations are to be efficient.
107
9
Cost – effectiveness of bowel cancer screening
Key evaluation findings
• Overall, based on Pilot data comparing national population screening with absence of screening, a national program will be cost-effective.
• For a target population aged 55-74 years, at the Pilot participation rate of 45.4% the estimated cost per additional life year saved is $24,000.
• For a target population aged 50-74 years, at the Pilot participation rate of 45.4% the conservative estimate of cost per additional life year saved is $20,000.
• These estimates can be considered conservative because there will be a further cost saving due to the reduction in current ad hoc ‘screening colonoscopies’ currently conducted in the average-risk population.
• Further, these estimates are based on the outcome data collected during the Pilot, which can be considered the minimum number of cancers and advanced adenomas detected in the Pilot, as the Register data included only 50% of referred follow-up colonoscopies at the time of the overall evaluation.
9.1 Cost-effectiveness of bowel cancer screening The Department commissioned M-TAG Pty Ltd to undertake an evaluation of the cost-effectiveness and financial impact of establishing a national bowel cancer screening program, largely based on the preliminary data from the Pilot (MTAG 2004). The assessment of cost-effectiveness of the national screening program was made in terms of the cost per additional life-year saved through the avoidance of death due to bowel cancer. The cost-effectiveness analysis compared national screening using biennial immunochemical FOBT with the absence of a screening program and indicated that the program will be cost-effective, with a cost per additional life-year saved of approximately $24,000 for the 55-74 year age group and $20,000 for the 50-74 year age group (Tables 9.1 and 9.2).
Table 9.1: Cost-effectiveness of Biennial National Biennial Bowel Cancer Screening Program Using Immunochemical FOBT (Individuals Aged 55–74 years)
Lifetime cost per 10,000 invited individuals ($ million)
Screening Diagnostic follow-up
Treatment and surveillance
Total
Life-years saved per
10,000 invited individuals
Incremental cost per life-year saved
($)
Current bowel cancer management – – 7.6 7.6 – – Screening program
2.5 2.3 7.6 12.4 200 23,937
108
Table 9.2: Cost-effectiveness of biennial national bowel cancer screening program using immunochemical FOBT (individuals Aged 50–74 years)
Lifetime cost per 10,000 invited individuals ($ million)
Screening Diagnostic follow-up
Treatment and surveillance
Total
Life-years saved per
10,000 invited individuals
Incremental cost per life-year saved
($)
Current bowel cancer management – – 7.5 7.5 – – Screening program 2.9 2.6 7.5 13.0 276 19,779
These estimates can be considered conservative because there will be a further cost saving due to the reduction in current ad hoc ‘screening colonoscopies’ currently conducted in the average-risk population. This reduction has not been incorporated into the cost-effectiveness analysis (MTAG 2004). The estimates are also conservative as they are based on the outcome data collected during the Pilot; these data can be considered the minimum number of cancers and advanced adenomas detected in the Pilot, as the Register data included only 50% of referred follow-up colonoscopies at the time of the overall evaluation. The participation rate is an integral part of any screening program and is an important contributor to the overall cost-effectiveness of the program. However the impact of participation on cost-effectiveness is a highly complex issue. Increasing the participation rate can improve the overall effectiveness but also increases the total costs of the program. For example, considering the 55-74 years of age screening program scenario at the target participation rate (70%) compared with the participation rate observed in the Pilot (45.4%), the improvement in the cost-effectiveness of the program is a change from approximately $24,000 to $19,000. This improvement in cost-effectiveness occurs because the development and coordination costs of a national program would be essentially fixed and spread over a larger number of participants (other marginal costs such as pathology, information payments and flow on assessment and treatment costs would vary directly according to the number of participants). However recent analysis shows that this may not be the case and that the overall participation rate may not have a large impact on the cost-effectiveness or a bowel screening (Howard 2005).
9.2 Cost-effectiveness relative to other programs The cost-effectiveness analysis, based on data from the Pilot, indicated that the implementation of a national bowel cancer screening program using an FOBT every two years for the age range 55-74 years represents ‘value for money’ for the Australian healthcare system. The current model-based evaluation, using preliminary Pilot data, indicated a base-case incremental cost-effectiveness of approximately $24,000 per life-year saved, relative to no screening program. Exploring an extreme range of prevalence and sensitivity and specificity values gave cost-effectiveness estimates in the range of approximately $17,000 to $31,000, all within the generally accepted range of cost-effectiveness of health-care programs. Compared to other government-funded cancer screening programs currently offered in Australia, the proposed bowel cancer screening program is cost-effective. The cost-effectiveness figures for the BreastScreen Australia and the National Cervical Screening Programs have been reported as approximately $9500 to $16,000 and $44,500 per life-year saved respectively (O’Leary 2004 cited MTAG 2004). Gyrd-Hansen (1999) has estimated that the overall cost-effectiveness of bowel cancer screening using FOBTs is superior to that for the current breast cancer and cervical screening programs in a Danish setting, based on
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data from the Funen randomised FOBT trial. The UK Nottingham randomised trial of FOBT screening collected data from 153,000 subjects, randomised to biennial FOBT screening or no-screening, over a period of more than 20 years. A recent analysis of the cost-effectiveness of this program indicated that it was highly cost-effective in a UK setting (Whynes 2004 cited MTAG 2004). It should be noted that the analysis was a trial-based evaluation using available mortality data (as opposed to the model-based simulation conducted for the Pilot cost-effectiveness analysis) and a guaiac FOBT (not the more sensitive and specific immunochemical FOBT as per this analysis). Further, the incidence and prevalence of bowel cancer in Australia is greater than that in the UK (AIHW 2003). The male age-standardised incidence in Australia is reported to be 20.20 per 100,000, compared with 18.73 per 100,000 in the UK. In view of the greater burden of disease indicated by the incidence figures, it is highly likely that FOBT screening would be at least as cost-effective in Australia, if not more so, than in the UK. The cost-effectiveness of bowel cancer screening using FOBTs has been described in many published economic evaluation documents. The absolute value of the cost-effectiveness of FOBT screening presented in the literature varies depending on the underlying assumptions and the screening populations under consideration. However, the majority of studies indicate that screening with FOBTs is cost-effective. The current M-TAG estimate of the cost-effectiveness of an FOBT screening program in the Australian population, based on the Pilot, is within the range of values reported in other economic analyses. It is recognised that the cost of a national program will depend on: • uptake; • how quickly the program is phased in; • current level of screening colonoscopy which could be displaced by an organised FOBT
based screening program; • cost savings that could be achieved due to economies of scale compared with the Pilot;
and • level of cost off-sets for treatment of bowel cancer.
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10 Towards a national program
The key overall evaluation finding of the Pilot is that bowel cancer screening using FOBTs as the screening test, with colonoscopy as the follow-up procedure, is feasible, acceptable and cost-effective in an Australian context. At the same time the Bowel Cancer Screening Pilot Monitoring and Evaluation Steering Committee recognised that, while the Pilot has established effective screening policies and protocols, there were many areas of further work that needed to be completed to build and develop a national bowel cancer screening program. Based on this key finding, the Steering Committee concluded that a framework needed to be established to support the introduction of a national bowel cancer screening program. Founding principle: The overall evaluation of the Pilot found that population screening for bowel cancer using FOBTs is feasible, acceptable and cost-effective in an Australian context. This indicates that a national bowel cancer screening program could be effectively and efficiently established in Australia. The remainder of this chapter presents a framework for bowel cancer screening in Australia and key features of an emerging and mature national program. The proposed framework is discussed in three categories:
• program design features: these address the target group, type and frequency of screening;
• direct service delivery features: these affect the nature of the service delivery process throughout the screening pathway; and
• support and quality assurance features: these encompass services elements, co-ordination and funding required to support quality service delivery.
A summary of the proposed framework and its key features is presented in Table 10.1, followed by a detailed description of each suggested component.
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Table 10.1: Summary of proposed framework for a national bowel cancer screening program
Founding principle: The overall evaluation of the Pilot found that population screening for bowel cancer using FOBTs is feasible, acceptable and cost-effective in an Australian context. This indicates that a
national bowel cancer screening program could be effectively and efficiently established in Australia.
Features of a national program
Program design Direct service delivery Support and quality assurance
• Immunochemical FOBTs as the screening modality.
• The target age range to be initially set at people aged between 55 to 74 years, with a review of the age range once the program is fully operational.
• People outside the target age group for screening should be provided information about their options for the prevention and early detection of bowel cancer.
• Biennial screening for participants with a negative FOBT.
• Positivity rates for FOBTs should not exceed 8.0%.
• A single national centralised register, building and improving on the operation and functionality of the Pilot register.
• Improved data capture and enhanced data integrity checks.
• Explore options for electronic data capture and transfer between service providers and the Register.
• Explore options for States and Territories to access data relating to the operation of the program in their jurisdiction.
• Promotion and education activities to raise awareness of bowel cancer and screening and support informed choice on participation.
• Specific targeted promotion and education programs for Aboriginal and Torres Strait Islander people and people from culturally and linguistically diverse backgrounds.
• Education of GPs on their central role in supporting informed participation in screening.
• Direct mail as the primary mechanism for invitations to participate, supported by supplementary distribution methods for different population sub groups.
• Invitations contain the minimum information to ensure informed consent.
• An additional FOBT not sent with the reminder letters.
• The national program supported by a national bowel cancer screening policy to ensure an integrated, systematic and coordinated approach to the program.
• Funding supports implementation of the policy and program.
• Commence mid 2006 with a phase-in period.
• States and Territories involved in implementation process
• Mechanisms for quality improvement across the screening pathway developed.
• Explore approaches to support the provision of quality colonoscopy services, for example, through accreditation of facilities and credentialing of proceduralists.
• Workforce modelling to assess the impact of the program.
• Facilitation of training in colonoscopy
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10.1 Program design features Recommendations that address the overall design features of the program, including the type of screening, the target group, frequency of screening and target participation rates are discussed below.
Use of immunochemical FOBTs for a national program
There were several factors that influenced the Implementation Committee to recommend the use of immunochemical FOBTs in the Pilot. The NHMRC Guidelines (1999) state that immunochemical FOBTs have advantages over traditional guaiac tests as they are not affected by diet and dietary restrictions are unnecessary (dietary restrictions have the potential to reduce participation rates when guaiac tests are used in a screening program) (NHMRC 1999). Other technical advantages of immunochemical FOBTs relative to guaiac tests are:
• the ability to automate pathology analysis of the tests; and • their higher sensitivity for colorectal neoplasia compared to guaiac tests (St John 1993). The Pilot demonstrated that immunochemical tests in an Australian context were at least as acceptable as other FOBTs in overseas programs. Overall participation by eligible people was 45.4%. Direct comparisons with overseas RCT experiences are difficult because the RCTs used guaiac-FOBTs and had different recruitment processes. However, a comparison with the UK RCT using Haemoccult FOBT in the 1990s is instructive. It reported a participation rate of 56.8%. The AIHW concluded that the Australian Pilot experience of participation rates was similar, after allowance is made for the UK RCT process of checking general practice enrolment rolls to remove ‘inappropriate’ participants prior to recruitment. Such a process did not occur in the Australian Pilot where all people resident in a Pilot site in the relevant age group were invited to participate (AIHW 2004). Further indications of the potential acceptability of an FOBT in a national program are that:
• the overall participation rates for the two FOBT kits used in the Pilot were broadly comparable (43.6% for !nform and 47.2% for Bayer Detect); and
• the overall participation rate varied by participant category (age and sex) but was as high as 65.1% for females aged 60 to 64 years at the Mackay Pilot site.
The Evaluation Steering Committee concluded that the use of immunochemical FOBTs for a national program was appropriate. It was also considered preferable to select one or more FOBT suppliers to ensure continuity of supply. This retains the flexibility to introduce new technologies to the national program as they are developed, subject to meeting agreed performance standards and selection through tendering process.
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The national bowel cancer screening program should use immunochemical FOBTs as the method of screening. One or more FOBT suppliers should be selected through a competitive tender process and should be required to meet contractual criteria developed in response to findings from the Pilot. In addition to specifications for stable, high-quality technical performance, these criteria should include a requirement for simple and clear instructions for use and guaranteed supply and high quality pathology analysis.
Target population age range
The NHMRC Guidelines note that the risk of developing bowel cancer rises sharply and progressively from age 50. The Guidelines also refer to an Australian Health Technology and Advisory Committee (1997) recommendation that there should be population screening for colorectal cancer by FOBT for the average risk population (well population aged over 50) (NHMRC 1999).
The Pilot was targeted at people aged 55 to 74 years. The then Minister for Health and Aged Care observed that the issue of age range would need to be re-considered prior to the implementation of a national bowel cancer screening program. People aged 50-54 are probably less likely to participate in a bowel cancer screening program (this is supported by the outcomes of the UK Pilot), and less likely to have clinically significant findings than people of a slightly older age group. Bringing this age group into the program would significantly increase the number of people in the target age group and make it more difficult to ensure there were appropriate colonoscopy services available for follow-up. Accordingly, any variation from the age group from that used in the Pilot would need to consider whether there was sufficient capacity to provide follow-up colonoscopy services. Decisions about an upper range in any screening program need to be balanced between relative risk of cancer and the existence of significant comorbidities. The inclusion of people aged over 75 years in a bowel cancer screening program is primarily a clinical management issue. The risks associated with managing an older person’s other conditions need to be balanced against their risk of developing bowel cancer. People over 75 years of age are more likely to suffer from multi-system disease or be on anti-coagulant medication. These issues need to be explored by individual patients in consultation with their GP.
A national bowel cancer screening program should initially target people aged 55 to 74 years of age, with a review once the program is fully operational. People outside the target age group for screening should be provided information about their options for the prevention and early detection of bowel cancer.
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Frequency of screening
The NHMRC Guidelines recommend that the minimum effective program is screening at least every second year, but preferably annually (NHMRC 1999). There is limited evidence that compares screening outcomes based on an annual versus biennial interval. The screening interval for the Pilot was notionally biennial. However, there was only one cycle of participant screening in the Pilot. On this basis it was concluded that the frequency of screening for the national program for participants with a negative FOBT from a previous screening round should be biennial until further evidence becomes available, either from overseas studies or from a further round of screening for Pilot participants.
The frequency of screening for the national program should be biennial, but this policy should be reviewed as new evidence on different screening intervals becomes available.
FOBT positivity rate
The overall positivity rate of the FOBTs used during the Pilot was 9.0%. This varied by FOBT type and by age of participant and over the course of the Pilot. For the later part of the Pilot the average positivity rate was 7.7% The combined positivity level for the two FOBTs was within the boundaries of reasonable acceptability. Too high a positivity rate would place pressure on the capacity of follow-up services and lead to increases in waiting times for colonoscopy. Too low a positivity rate would result in failure of the screening process to adequately identify cancers or pre-cancerous adenomas. It would be useful to analyse Pilot data to assess the impact of changing test positivity cut-off points on clinical outcomes for participants in terms of cancer and adenoma detection rates. Analysis of this type over a longer period would aid in reassessing appropriate cut-off points and acceptable positivity rates in a national program. The variability in FOBT positivity rates experienced during the Pilot indicates the need for ongoing monitoring of this quality indicator. Furthermore, explanations for significant variations should be sought from the manufacturers and/or pathology processing laboratories.
The FOBT positivity rates observed in the national program should be closely monitored and should not exceed the overall positivity rate of the Pilot (8.0%). The impact of changing test positivity cut-off points on clinical outcomes for participants, in terms of cancer and adenoma detection rates, should be analysed to support reassessing appropriate cut-off points and acceptable positivity rates in a national program.
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10.2 Direct service delivery features Recommendations that affect the nature of the service delivery process throughout the screening pathway are discussed in this section. This includes activities relating to the following pathway activities:
• recruitment: activities involved in making the target population aware of the screening program and inviting them to participate; and
• screening: comprises sending FOBT kits for processing, notifying participants and their nominated GP of the results, and referring people with positive screen results to specialists for assessment and follow-up colonoscopy services and histopathological assessment as required.
Scope of the register for a national program
Use of a national register to manage invitation and assessment processes
Experience with existing Australian population screening programs highlighted the difficulties in transferring data to other State or Territory registers when people move, and in ensuring nationally consistent data collections and definitions. The Pilot demonstrated the benefits and capacity of a centralised register as the cornerstone of a national screening program. In addition to providing an invitation and follow-up system, the Register also had the capacity to facilitate quality assurance processes across the entire pathway. It provided monitoring data on performance against standards that could be used to investigate continuous improvement opportunities at different points on the screening pathway. There are a number of enhancements that could be made to improve the functionality and useability of an effective national Register, including:
• data captured at the GP practice, pathology laboratory, specialist practice, procedure centre/service and histopathology provider should ideally promote electronic forms and transfer of data, avoiding the use of paper-based forms;
• provision of incentives for software vendors to incorporate the functionality required to facilitate electronic data transfer;
• identifying opportunities for better tracking of participants through the screening pathway; • providing access to States and Territories to local data so as to allow management of those
functions for which they are responsible; • development of standard quality assurance reports could be investigated to provide
feedback to clinicians as an incentive to provide data to the Register; and • strengthening quality assurance processes regarding Register data integrity could be
strengthened by implementing formalised interrogation and data review processes, to ensure completeness and validity.
The cost of building and operating the Register for the Pilot was significantly underestimated at the outset of the Pilot. Preliminary estimates prepared by external IT specialists suggest that there could be significant opportunities for system development and operational efficiencies realised by seeking a solution from external providers. That is, by tendering for the development and implementation of a central Register.
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A single, centralised register, building on and improving the operational foundations and functions of the Pilot Register, would effectively support the operations of a national bowel cancer screening program. Ensuring that there is more complete capture of data and data integrity checks will be critical for the monitoring of the program. There should be an investigation of options for States and Territories to access data relating to their own jurisdiction in order for them to carry out their roles in the program.
Community education, awareness and targeted recruitment campaigns
Promoting bowel cancer screening
Recruitment activities in a screening program can comprise public information and education campaigns, professional education, and the provision of information targeted at individuals. The Knowledge, Attitudes and Practices research into underlying community awareness of bowel cancer, conducted as part of the evaluation of the Pilot, demonstrated that there were initially low levels of community knowledge about bowel cancer and the need for screening. A follow up survey conducted at the end of the Pilot, when sites had completed community mobilisation and invitation processes, showed that awareness levels in the Pilot sites had increased, demonstrating that there is scope for increasing public awareness of the disease and promoting positive community responses to a screening program. A public awareness campaign, similar to that introduced when the BreastScreen Australia program had been fully phased-in across all States and Territories, could play an important part in the success of a national program for bowel cancer screening. The public needs to be aware of the prevalence of the disease and its associated risks to support informed choice regarding participation in the program. A low participation rate could reduce the cost-effectiveness of the program. Effective communication to all sectors of the community is fundamental to the provision of a national screening program. A national bowel cancer screening program must therefore address the specific needs of Aboriginal and Torres Strait Islander people and people from culturally and linguistically diverse backgrounds to ensure equity in health outcomes. Appropriate information also needs to be provided to people who outside the target age range for screening, explaining to them how they can reduce their risk of bowel cancer, identify symptoms and have not been included in the target group for screening.
Well designed and implemented promotion and education activities appropriate for the target population and tailored to meet the needs of diverse population groups, will improve public awareness and knowledge of bowel cancer and screening, and support informed choice regarding participation.
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The role of GPs and GP education
General practitioners would play a central role in a national bowel cancer screening program. GPs are also in a strong position to promote general community awareness of bowel cancer in their day-to-day interactions with patients. The engagement of Divisions of General Practice to coordinate education strategies for GPs involved in the Pilot proved effective. GPs at the Pilot sites commented on the important role of Divisions in informing them about Pilot processes and dealing with queries. In a national program there could be opportunities to develop common toolkits and templates, based on the experiences of the Divisions of General Practice in the Pilot sites.
Education of GPs on their central role in promoting participation in bowel cancer screening and coordinating follow-up processes would be an important part of a national bowel cancer screening program.
Invitation process
The Pilot demonstrated that direct mail from a central register of an invitation to participate and an FOBT worked well as a primary source of recruiting eligible people to participate in screening.
Direct mail of invitations would be an effective primary mechanism for invitation and distribution of FOBTs in a national program.
The use of direct mail as the primary distribution channel of the invitation package requires a consumer to have a fixed address. However, there are people in the community without a fixed address. Those most likely to not have an address are Aboriginal and Torres Strait Islander people and those from low socio-economic groups, particularly homeless people. These people require an alternative distribution mechanism for the invitation where possible. A national program should consider supplementary methods of distribution of the invitation package for these groups. For example, it would be possible that certain GPs and health workers could either distribute the FOBT or advise the Register of an alternative pickup address with convenient public access, such as community health services or Aboriginal Medical Services. A national program should address the following:
• establishing dedicated national working groups for Aboriginal and Torres Strait Islander and culturally and linguistically diverse community input, to maximise informed participation from diverse population sub groups, including people with a disability;
• providing invitation package materials in languages other than English, at an appropriate reading level;
• developing culturally appropriate education, training and promotional material; and • generating community awareness through GPs and community health services, as well as
through the targeted use of ethnic media and local information sessions.
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A national screening program should consider supplementary methods of invitation, particularly for Aboriginal and Torres Strait Islander peoples, and how best to promote the inclusion of groups within the community with different needs. For example, those with a disability or from culturally and linguistically diverse backgrounds.
Contents of the invitation package
The evaluation of the Pilot suggested that the invitation package should:
• have the minimum necessary content, whilst facilitating informed consent; • make it clear that an FOBT is included in the package; • ensure that the invitation package is distinguishable from junk mail; and • contain material in clear, simple language that is translated appropriately where required.
The contents of the invitation pack should contain only the minimum information sufficient to facilitate informed consent and participation in screening.
Use of reminder letters
The Pilot demonstrated the effectiveness of issuing a reminder letter. There was no evidence however, of the effectiveness of providing an additional kit with a reminder letter.
A reminder letter should be sent to people who do not respond to an invitation to participate in screening around six weeks after the initial invitation is issued. An additional FOBT should not be sent out with the reminder letter.
10.3 Support and quality assurance Service elements, coordination and funding required to support direct service delivery for a national program are discussed in this section. This includes establishing:
• national program structure and governance arrangements; • training and workforce development processes; • quality assurance mechanisms; and • sustainable funding arrangements.
Program structure and governance
The Pilot has demonstrated that the management of a bowel cancer screening program requires an organised and coordinated approach to ensure that:
• resources are effectively used at all points along the screening pathway; and • a bowel cancer screening program works in conjunction with the pre-existing network of
local, regional, state and national service providers to leverage off their resources and expertise.
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Experience from the breast cancer and cervical cancer screening programs over a decade and a half has highlighted the benefits of a national policy to promote uniform planning and coordinated implementation of service delivery goals nationally and across states and territories. On this basis it is suggested that a national bowel cancer screening policy is required to guide development and implementation of a national program. The policy should have a number of components covering program objectives, the target population, re-screening interval, tests to be used for the program, performance criteria, and principles for organisation of services. The national policy should promote the development of an integrated, systematic and coordinated bowel screening program by specifying program standards on: • uniform recruitment methods and consistent communication of messages to support
participation; • centrally coordinated measures to ensure screening and assessment are of a high standard,
with a focus on specialised training for colonoscopists, pathologists, gastroenterology nurses, and nurse coordinators in screening and assessment, including an understanding of the psychosocial impact of screening;
• mechanisms to ensure appropriate assessment and counselling when necessary; • a framework for maintaining quality across the screening pathway; and • Ongoing monitoring and evaluation, particularly to support continuous quality
improvement within a national program. Specific attention is also required in relation to duty of care and safety net provisions. A national program should also consider mechanisms which promote:
• high recruitment rates in the target population; • high quality and well integrated service provider roles in the clinical pathway; • adherence to the national screening guidelines or policy; • flexibility in the way individual States and Territories choose to organise the provision of
screening and assessment services, including the public-private mix of services (subject to meeting the national guidelines); and
• equality of application in the private and public sectors.
A national bowel cancer screening program would be supported by a national bowel cancer screening policy to ensure an integrated, systematic and coordinated approach. The policy needs to address:
• National, State and Territory coordination mechanisms. • Duty of care and related safety net provisions for all those providing
services to screening participants. • Access to services across the screening pathway. • Specialised training and workforce issues. • Mechanisms for ensuring quality across the program. • Effective tracking of participants through the screening pathway. • Ongoing monitoring and evaluation of program and service performance. • Arrangements for ongoing research and program review to support
continuous improvement.
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Implementing a national program
Given the efforts placed in establishing sound policies and protocols for the Pilot, and their success in instituting effective bowel cancer screening, it may be that initially only minor adjustments need to be made to the pathway, policies and protocols to support implementation of a national program. While implementation of a national program is a decision for the Australian Government, it may be possible for a national program to commence a phase-in of the program as early as mid 2006. If a national program is established it would be preferable to phase it in over a period of time to allow for building up of infrastructure and workforce. Implementation of a national program would be a large logistical exercise because of the number of parties involved, the need to assess local and regional resource constraints, and the requirement to put appropriate funding arrangements in place. State and Territory health authorities would also wish to contribute input on systemic barriers and opportunities within their own jurisdictions which could impact on the introduction of bowel cancer screening at a national level.
It may be possible to implement a national screening program by mid 2006, with a phase-in period to allow for the development and implementation of the necessary infrastructure to support a national program, in particular workforce capacity.
States and Territories should have a high level of involvement in the implementation of a national bowel cancer screening program, in particular to provide input on approaches which would support implementation within their jurisdiction.
Workforce implications
Currently, colonoscopy services are provided in both public and private facilities, and there appears to be adequate resources available at an aggregate level. The evidence also suggests that the colonoscopy services provided are of good quality and the system of service provision is reasonably efficient (DoHA 2004a). There are however, differences in workforce capacity between metropolitan and rural and remote regions. Rural and remote regions have particular issues with reduced availability of colonoscopists and nurses. They also have unique challenges. For example, the Cairns fly in-fly out outreach endoscopy service can only undertake limited colonoscopies because there is insufficient staff locally to manage the preparation of patients (DoHA 2004a). Some services have already explored options for service delivery to meet geographical and demographic diversity, addressing both facilities and workforce capacity. For example, mobile services have the potential to supplement fixed facilities. There are successful examples of this practice in some states now, often including nurses as service providers as well as medically-qualified colonoscopists. All members of these mobile teams are fully trained procedural experts.
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Other models include hub and spoke systems whereby a central ‘hub’ is established, often in a teaching hospital. Appropriately staffed and equipped support staff in geographically distant ‘spokes’ undertake procedures under the clinical supervision of senior staff in the ‘hub’. Importation of trained multidisciplinary staff into rural and remote areas appears to have general support due to the perceived shortage of practitioners in these areas. There is also some openness to proceduralists other than those who currently perform colonoscopies, such as GPs and registered nurses, undertaking colonoscopies provided adequate training and supervision is provided. Based on this diversity of experience it would be important to undertake detailed workforce modelling of the impact of a national program on the demand for colonoscopists and nurses, which need to consider:
• geographic variations in current and projected workforce demands; • variations in the mix of professional groups undertaking colonoscopy services; and • the implications of workforce demand for change to the mix of training programs. Workforce capacity to meet increases in demand for colonoscopy services is also dependent on the FOBT positivity rate. Workforce modelling would need to conduct sensitivity analysis in relation to FOBT positivity rates Queensland Health has carried out some analysis of potential additional colonoscopy capacity and workforce modelling which may form a useful basis for further work.
Workforce modelling should be undertaken to analyse current and forecast future workforce capacity for all disciplines across the screening pathway. For this to be completed, comprehensive data collection and the analysis of potential under-utilised capacity needs to be carried out. Strategies would need to be developed to address future workforce needs in a national program.
Workforce training
Appropriate workforce training should be an integral component of a national program. Training of colonoscopists has been identified as an important issue. Particular concerns include: the adequacy of current training; the lack of a coordinated approach; where training of colonoscopists should be undertaken, that is within the public and/or private sector; and identification of training needs. Some States and Territories are establishing skill development centres and these could play an important role in a national program, particularly for the training of proceduralists in rural and remote areas. These special training centres would not necessarily be new but existing centres with a dedicated training area and with enhanced funding for increased education and research. In the United Kingdom, similar centres have resulted in better co-ordinated training and higher standards of performance with associated cost benefits.
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There would also be a need to provide an adequate and appropriate workforce for managing the follow-up of Aboriginal and Torres Strait Islander people and people from culturally and linguistically diverse backgrounds. This might entail specific workforce training. Further exploration of the training needs of the workforce for all relevant population groups would be required and ideally integrated into a national colonoscopy training program supported by relevant professional associations and facilities.
A consistent and comprehensive national colonoscopy training program should be facilitated to ensure quality colonoscopy services, in metropolitan, regional, rural and remote areas.
Quality
There are currently no uniform national measures or systematic requirements for reporting against quality standards for colonoscopy nor is there a cohesive system addressing quality in facilities or credentialing of proceduralists. There is a perception that the lack of uniform standards has led to variations in the quality of colonoscopy procedures between and within States and Territories. Similarly, variations across States and Territories in requirements for licensing of private facilities may also influence the quality of services provided. Harmonising licensing of private facilities would form a strong component of a national colonoscopy quality system. However, this would require jurisdictional change and negotiation at Australian, State and Territory government levels to harmonise disparate legislation and licensing regulations. This would take a number of years to achieve and should be regarded as a long-term goal. While there is a well developed process for recognition of training, there is currently no formal credentialing of proceduralists or formal processes in place to ensure ongoing competency of colonoscopists in Australia. The relevant professional colleges have credentialing processes for general surgical competence and courses available for specialised training in gastroenterology and coloproctology. Documents such as the Standards for endoscopic facilities and services developed by the Gastroenterological Society of Australia (GESA) and the Gastroenterological Nurses College of Australia (GENCA) would provide an important guide in formulating standards for a national program.
A national program should support the development of mechanisms for quality assurance and improvement across the entire screening pathway.
Funding options for follow-up colonoscopy
There are a range of funding options that could be considered to address the resourcing requirements for follow-up colonoscopy services in the national program. The three Pilot sites operated different funding models for follow-up services. For example, Victoria and Queensland favoured contracting for additional colonoscopy services, arguing that:
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• it allows greater control of quality improvement reporting, monitoring and evaluation and could be used as a risk management tool for implementation of screening;
• dedicated resourcing reduces the risk of funds being shifted to the wider health system because sessions are put aside for participants in the program, reducing concerns of expanding waiting lists;
• it supports participant choice and increases equity of access to follow-up services; • it potentially provides greater opportunity to implement processes and timing that better
supports fully informed consent; and • it also supports better planning of supply and demand for colonoscopy services that are
linked to the timing of the invitations. Integration of funding into mainstream services would be a much simpler model with less paperwork for facilities and proceduralists. It could be argued that contracting for colonoscopies for a national bowel cancer screening program could lead to some impact on other health services, particularly in rural and remote areas. For example, if there are designated waiting times for people who have a positive FOBT, then the waiting times for people who are not participating in the program, but have symptoms requiring investigation may increase. Other possible funding options include tying funding to accreditation of facilities, credentialing of proceduralists, and a requirement for compliance in both public and private facilities. Such an approach would provide strong support for continuous improvement. Further exploration should be considered of funding mechanisms across the screening pathway up to and including colonoscopy and associated histopathology, which are linked to quality assurance, accredited facilities and equal access to services.
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References Aboriginal and Torres Strait Islander Working Group 2004. Bowel Cancer Screening Pilot Program, Draft Recommendations Paper, unpublished Australian Bureau of Statistics (ABS) 2003. 2001 Census of Population and Housing: Socio-Economic Indexes for Areas. Information paper. Cat. No., 2039.0., ABS, Canberra Australian Institute of Health and Welfare (AIHW) & Australasian Association of Cancer Registries (AACR) 2003 Cancer In Australia 2000. Cat. No. 18. Canberra: AIHW (Cancer Series no.23) AIHW 2004. The Australian Bowel Cancer Screening Pilot Program: Analysis of Routinely Collected Screening Data AIHW 2005 Health system expenditures on cancer and other neoplasms in Australia, 2000–01. Cat. no. HWE 29.Canberra: AIHW (Health and Welfare Expenditure Series no. 22) Australian Health Ministers’ Advisory Council (AHMAC), Breast Cancer Screening Evaluation Committee. 1990. Breast Cancer Screening in Australia: Future Directions. Australian Institute of Health: Prevention Program Evaluation Series No 1. Canberra, AGPS Australian Health Technology Advisory Committee (AHTAC) 1997, Colorectal Screening, Canberra, AGPS Bowel Screening Pilot Implementation Committee (Implementation Committee) 2001a. Summary of Literature Regarding Invitation-to-Screening Methods for Bowel Cancer. unpublished Bowel Screening Pilot Implementation Committee (Implementation Committee). 2001b. Development of a Screening Register for the Bowel Cancer Screening Pilot. Information/discussion paper. unpublished Chappell G, Mitchell H, Roder D. March 2004. Review of Bowel Screening Pilot Register. unpublished Cultural Perspectives. 2004. Bowel Cancer Screening Pilot Evaluation: Research Results for Culturally and Linguistically Diverse, Aboriginal, Torres Strait & South Sea Islander Communities. unpublished Department of Health and Ageing (DoHA) 2002. Briefing Paper, National Public Health Partnership, Agenda Item no 8.3 DoHA 2003. Policy and Procedure Manual. Bowel Cancer Screening Pilot. unpublished DoHA 2004a. Workforce & Quality Issues in Colonoscopy Workshop, Draft Outcomes Paper. unpublished
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DoHA 2004b. Record of Outcomes: Bowel Cancer Screening National GP Workshop. unpublished Hardcastle, J.D., Chamberlain, J.O., Robinson, M.H.E, Moss, S.M., Amar, S.S., Balfour, T.W., James, P.D. & Mangham, C.M. 1996. Randomised controlled trial of faecal occult blood screening for colorectal cancer. Lancet vol 348: pp. 1472-1477 Health Insurance Commission (HIC), 2004, Bowel Cancer Screening Pilot Register, Business Requirements (draft) unpublished Howard, K., Salkeld, G., Irwig, L. & Adlestein, B. 2005. High participation rates are not necessary for cost-effective colorectal cancer screening. Journal of Medical Screening, vol 12(2), pp 96-102 Kronberg, O., Fenger, C., Olsen, J., Jorgenson, O.D. & Sondergaard, O. 1996. Randomised study of screening for colorectal cancer with faecal-occult-blood test. Lancet vol 348: 1467-1471 Mandel, J.S., Bond, J.H., Church, T.R., Snover, D.C., Bradley, G.M., Schuman, L.M. & Ederer. F. 1993 Reducing mortality from colorectal cancer by screening for fecal occult blood. Minnesota Cancer Control Study, New England Journal of Medicine; vol. 328, pp.1365-1371 MTAG Pty Ltd 2004. Cost-effectiveness Evaluation of a National Bowel Cancer Screening Program. unpublished working document. Multicultural Working Group. 2004. Addressing the Needs of Culturally and Linguistically Diverse Communities in a National Screening Program for Bowel Cancer. unpublished National Health and Medical Research Council (NHMRC) 1999, Guidelines for the prevention, early detection and management of Colorectal Cancer (CRC), Commonwealth of Australia, Canberra North East Valley Division of General Practice 2004. Implications for a National Program; Discussion Paper; Adelaide Western and Southern Divisions of General Practice, (May 2004), Bowel Cancer Screening Pilot Program Queensland Health. 2004a. Knowledge, Attitudes and Practices; 2004 Post-intervention surveys. Questionnaire and Weighted Results. Epidemiology Services Unit, Health Information Branch, Queensland Health Queensland Health. 2004b. Knowledge, Attitudes and Practices; Bowel Cancer Knowledge, Perceptions and Screening Behaviours Report. Epidemiology Services Unit, Health Information Branch, Queensland Health Rex DK, Bond JH, Winawer S, Levin TR, Burt RW, Johnson DA, Kirk LM, Litlin S, Lieberman DA, Waye JD, Church J, Marshall JB, Riddell RH. 2002. Quality in the technical performance of colonoscopy and the continuous quality improvement process for colonoscopy; recommendations of the US Multi-society task force on colorectal cancer’, The American Journal of Gastroenterology, Vol 97., No. 6, pp1296-1308
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St John, D.J., Young, G.P., Alexeyeff, M.A., Deacon, M.C., Cuthbertson, A.M., Macrae, F.A. & Penfold, J.C. 1993. Evaluation of new occult blood tests for detection of colorectal neoplasia Gastroenterology. Vol 104(6) pp1661-1668 UK CRC Screening Evaluation Team. 2003. Evaluation of the UK Colorectal Cancer Screening Pilot. available on www.cancerscreening.nhs.uk/bowel/finalreport.pdf Wilson JMG, Jungner, J. 1968 Principles and Practice of Screening for Disease World Health Organization Geneva. Public Health Papers No. 34 Woolcott Research. 2004. A Qualitative Evaluation of Opinions, Attitudes and Behaviours Influencing the Bowel Cancer Screening Pilot Program. unpublished
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Appendix A: Abbreviations and acronyms
AHMAC AHTAC
Australian Health Ministers’ Advisory Council Australian Health Technology Advisory Committee
AIHW The Australian Institute of Health and Welfare ASAC Australian Screening Advisory Committee CALD Culturally and Linguistically Diverse CCSU Cancer Screening Services Unit, QLD Health CC SA Cancer Council South Australia CCV Cancer Council Victoria CI Confidence Interval (95%) Division Division of General Practice DoHA / the Department Australian Department of Health and Ageing DHSH Department of Human Services and Health, South Australia DHS Department of Human Services, Victoria DRG Diagnosis Related Groups DVA Australian Department of Veterans’ Affairs FOBT Faecal occult blood test GP General practitioner HIC Health Insurance Commission HMA Healthcare Management Advisors KAP Knowledge, Attitudes, Practices Survey MBS Medicare Benefits Schedule MTAG Medical Technology Advisory Group
(an external consultant appointed by DoHA) MESC Monitoring and Evaluation Steering Committee overseeing the Pilot
evaluation METG Monitoring and Evaluation Task Group
(reported to the Pilot Implementation Committee) NAIDOC National Aboriginal Islander Day Observance Committee NHMRC National Health and Medical Research Council Pilot site Three areas with predefined postcodes where the Bowel Cancer
Screening Pilot operated (Adelaide, Mackay and Melbourne) Queensland Health Department of Health, Queensland QTG Quality Task Group, established for the Pilot RCT Randomised controlled trial the Pilot Bowel Cancer Screening Pilot Program the Register Bowel Cancer Screening Pilot Register maintained by HIC
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Appendix B: Membership of Implementation
Committee and Task Groups
The names below represent only some of the people involved in the development and implementation of the Bowel Cancer Screening Pilot. Implementation Committee Professor Bruce Armstrong, Dr Frida Cheok, Dr Wayne Clapton, Dr Steve Clark, Professor Alan Coates, Dr David Deam, Dr Katie Ellard, Professor Mark Elwood, Professor Brendon Kearney, Dr Barbara Leggett, Ms Darlene Mathen, Mr Russell McGowan, Mrs Margaret Minton, Ms Jennifer Muller, Ms Dorothy Reading, Professor James St John, Dr Glenn Salkeld, Ms Kym Scanlon, Dr Jane Smith, Dr Russell Stitz, Professor Robert Thomas, Dr Leslie Rae, Dr Sue Whicker / Dr Nathan Pinksier, Mr Rory Wilby, Professor Graeme Young. Australian Government Representatives: Professor Richard Smallwood (Chair), Ms Judy Blazow, Ms Sarah Major, Professor John Matthews, Dr Chris Stevenson (AIHW). Executive Committee Professor Bruce Armstrong, Professor Mark Elwood, Professor Les Irwig, Professor James St. John, Professor Graeme Young. Australian Government Representatives: Ms Judy Blazow, Ms Sarah Major, Professor Richard Smallwood. Policy Task Group Professor Bruce Armstrong (Chair), Professor Alan Coates, Professor Les Irwig, Professor Brendon Kearney, Mr Russell McGowan, Dr Andrew Pascoe, Professor James St John, Dr Jane Smith, Dr Chris Stevenson, Dr Russell Stitz, Dr Sue Whicker / Dr Nathan Pinskier. Australian Government Representatives: Ms Sarah Major, Ms Jennifer Whaler (Observer, Health Insurance Commission).
Quality Task Group (QTG) Professor James St John (Chair), Dr David Deam, Dr Huw Llewellyn, Dr Finlay Macrae, Dr Ken Sikaris, Dr Jane Smith, Dr Sue Whicker / Dr Nathan Pinksier. Australian Government Representatives: Ms Sarah Major / Ms Andriana Koukari.
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Communication and Education Task Group Professor Graeme Young (Chair), Dr Gerard Connors, Dr Katie Ellard, Mrs Margaret Minton, Ms Dorothy Reading, Dr Jane Smith, Professor Robert Thomas, Dr Deborah Turnbull. Australian Government Representatives: Dr Tom Carroll, Ms Deborah Keeley, Ms Sarah Major. Monitoring and Evaluation Task Group (METG) Professor Mark Elwood (Chair), Mr Russell McGowan, Dr Leslie Rae, Dr Glenn Salkeld, Dr Jane Smith, Ms Margaret Staples, Dr Melanie Wakefield, Professor David Weller. Australian Government Representatives: Ms Sarah Major / Ms Andriana Koukari, Ms Jenny Whaler (HIC), Dr Chris Stevenson (AIHW). Monitoring and Evaluation Steering Committee (MESC) Established in June 2004 to oversee the evaluation of the Pilot Ms Jennifer Muller (Chair), Professor Mark Elwood, Professor Les Irwig, Professor Finlay Macrae, Professor James St John, Dr Glenn Salkeld, Professor Graeme Young. Australian Government Representatives: Ms Andriana Koukari, Ms Pat Read, Dr Chris Stevenson (AIHW). Indigenous Task Group Mr Doug Hodgson (Co-Chair), Mr Daryl Nayler (Co-Chair), Ms Karen Andrews, Mr Jimmy Dickson, Ms Sue Elliott, Ms Shirley Firebrace, Ms Bel Lui, Dr Fiona Millard, Mr Rory Wilby. Australian Government Representatives: Ms Angelika Erpic, Ms Jeanine Snider. Victorian Advisory Committee Dr Rosemary Lester (Chair), Dr Mary Belfrage, Mr Andrew Bui, Ms Jane Cakaric, Ms Belinda Caldwell, Ms Alison Elliot, Dr Ian Faragher, Mr Ian Godall, Dr Paul Gow, Dr Mira Kapur, Dr Geoffrey Lindeman, Dr Ken Mansbridge, Ms Katrina Murphy, Ms Alison Peipers, Ms Dorothy Reading, Professor James St John, Mr Luciano Sanzin, Mr Craig Sinclair, Dr Peter Thurlow, Dr Mary Turner, Mr Rory Wilby. Australian Government Representatives: Ms Karen Kapelis. South Australian Implementation Committee Mr Keath Bailey, Dr Peter Bampton, Ms Heather Banham, Ms Janet Brinkworth, Dr Frida Cheok, Mr Peter Cheung, Dr Wayne Clapton, Mr Steve Cole, Dr Peter DelFante, Ms Sue Elliott, Dr Linda Foreman, Ms Bev Freeling, Ms Sue Gilchrist, Mr Peter Hewett, Mr Doug Hodson, Prof Brendon Kearney, Ms Ellen Kerrins, Dr Jacqueline Kew, Ms Julie Marker, Ms Joylene Morcom, Dr Annapurna Nori, Ms Julie Olsen, Ms Toni Prochazka, Dr Pam Rachootin, Prof Ian Roberts-Thomson, Ms Debra Rowett, Professor John Skinner, Dr Graeme Suthers, Mr Jim Sweeney, Dr Deborah Turnbull, Dr Tori Wade, Dr Helena Williams, Professor Graeme Young. Commonwealth Representatives: Ms Andriana Koukari, Ms Angelika Erpic.
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Mackay Pilot Site Dr David Parker (Chair), Ms Deborah Bishop, Ms Ronda Duncan, Mr Christian Grieves, Ms Christine Hauff, Ms Bel Lui, Dr Craig Margetts, Ms Tracey McMahon, Dr Fiona Millard, Dr Lynne Mulholland, Ms Jennifer Muller, Ms Robyn Nikolsky, Ms Jane Paine, Ms Margaret Porter-Doherty, Ms Marj Preston.
Australian Government Representatives: Ms Pat Read. Australian Government staff involved in the Bowel Cancer Screening Pilot Ms Susan Adams, Ms Judy Blazow, Ms Laura Brookes, Ms Michelle Charlton, Ms Jen Clarke, Ms Lynne Clune, Ms Leah Commons, Ms Rebecca Dadds, Mr Richard Eccles, Ms Angelika Erpic, Ms Donelle Forno, Mr Brian K Harrison, Ms Cathy Hotstone (AIHW), Ms Pam Jupp, Ms Jo Kichenside, Ms Sandra King, Ms Anne Kingston, Ms Andriana Koukari, Ms Sarah Major, Ms Maryellen Moore, Mr James Morris, Mr Shane Porter, Ms Pat Read, Ms Liz Resiak, Ms Jo Schell, Ms Janetta Seed (HIC), Ms Vicki Shaw, Ms Carolyn Smith, Ms Jeanine Snider, Dr Chris Stevenson (AIHW), Mr Andrew Stuart, Dr Bernie Towler, Ms Kerry Watts, Ms Jenny Whaler (HIC). Pilot Workshop Facilitator Ms Ann Porcino, RPR Consulting. Probity advisers Mr Peter Bell, Ms Kerrie Fisher, Ernst and Young Canberra.
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Appendix C: Contributing projects and
documentation reviewed
Knowledge, Attitudes and Practices Surveys Two Computer-Assisted Telephone Interview (CATI) surveys of Knowledge, Attitudes and Practices (KAP) related to bowel cancer and bowel cancer screening within the Pilot sites were conducted over the course of the Pilot. The first was conducted prior to the start of the Pilot to obtain baseline information, the second near the end of the Pilot to ascertain the change in: the level of knowledge of bowel cancer and bowel cancer screening; attitudes to screening; factors which influence participation and non-participation; intention to participate; and privacy. Both surveys were conducted by the Epidemiology Services Unit, Health Information Centre, Queensland Health. Qualitative Research Survey A qualitative research project titled Qualitative Research with General Practitioners and Consumers Aged 55 to 74 Years to explore Attitudes, Opinions and Behaviours that Influenced Participation in the Three Bowel Cancer Screening Pilot Sites was conducted by the Research and Marketing Group, Information and Communication Division, Department of Health and Ageing. This project was contracted to Woolcott Research which conducted the research by using focus groups of GPs and Pilot invitees. The component dealing with invitees included representation from Aboriginal and Torres Strait Islander people, people from four different culturally and linguistically diverse backgrounds, South Sea Islander people and mainstream groups. It took into account the two different FOBT test kits used and included people who chose not to participate. Quantitative The Australian Institute of Health and Welfare (AIHW) undertook monitoring on a quarterly basis throughout the course of the Pilot. This monitoring was based on data from the Pilot Register, established by the Health Insurance Commission. The Register contained all details in relation to participants' data, including invitation and follow-up, FOBT kit usage and associated pathology, contacts with all health practitioners and histopathological data. The first monitoring report was released by the AIHW in August 2003. Monitoring also took place through the Pilot Helpline and through the Pilot pathology analysis providers. A detailed evaluation report was produced by the AIHW which covered all indicators contained in the Monitoring and Evaluation Framework. Cost-Effectiveness Study A study of FOBT tests was sponsored by the Medical Services Advisory Committee. The work done, in particular the model developed in this exercise, was then extended into a cost-effectiveness analysis model. This project was undertaken by the Medical Technology Advisory Group (MTAG), an independent research company who conducted the analysis and prepared a document outlining the economic issues associated with the implementation of a
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national Australian colorectal cancer screening program. Final monitoring data from the Pilot was used to ensure that the model is run using real data to set probabilities. Pilot Site Evaluations A requirement for reporting against agreed outcomes is part of contract arrangements with State health departments and local GP Divisions in the Pilot sites. This has provided information on the effectiveness of local level activities. Two cross Pilot site working groups were established to consider ways in which to assess the effectiveness of communication strategies with, and involvement of, Aboriginal and Torres Strait Islander people and people from culturally and linguistically diverse backgrounds. Additionally, a working group has produced a paper on the attitudes and experiences of GPs working in the Pilot sites. Register Review One of the central aspects of the Pilot was the development of a national register by the Health Insurance Commission (HIC) to select and invite potential participants and record results, processes and procedures undertaken and quantitative measures of all steps in the screening pathway. An expert group undertook a review of the capacity of the register, its operation, and quality assurance mechanisms, and commented on costs in the context of other similar registers. The review report was received and HIC modified some aspects of register operations to meet the recommendations. A follow-up review was carried out and the reviewers were satisfied that the Register was performing its role adequately and that the Register data was as sound as possible to support the evaluation of the Pilot. Expert Workshops A series of workshops, meetings and forums were held. These aimed to advise people outside the Pilot sites on the preliminary outcomes of the Pilot and to seek feedback on implications of these for a possible national program. Colonoscopy Workshop Held on 5 April 2004 in Sydney. Aimed to: • bring together key stakeholders to consider big picture issues and strategies influencing
the workforce; • discuss the short, medium and longer-term opportunities for strengthening the workforce; • determine actions and strategies to progress the quality and workforce agenda; and • identify models and issues that will inform Government decisions on a potential national
bowel cancer screening program. The workshop was highly successful and very well received. Participants provided thoughtful feedback. This is currently being developed into a short paper addressing quality and workforce capacity in the area of colonoscopy which will feed into the overall evaluation. GP Workshop Held on 24 August 2004 in Canberra. ADGP, RACGP, AMA and rural doctors organisations were all represented. The aim of the workshop was to discuss the experiences of GPs and Divisions during the Pilot and explore issues for general practice under a possible national program. A paper on the outcomes of the workshop has been prepared.
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Jurisdictional Meeting Held on 30 September 2004 in Sydney with States and Territories to provide an update on progress of the Pilot and to discuss potential roles of States and Territories in a possible national program.
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Appendix D: List of Figures and Tables
LIST OF FIGURES Figure 1.1: Pilot Screening Pathway....................................................................................................................................10 Figure 1.2: Projects, Consultancies and Workshops Informing the Overall Evaluation .....................................................15 Figure 1.3: Pilot Program Logic and Key Evaluation Areas................................................................................................17 Figure 4.1: Example Local Media Advertisement of Pilot ..................................................................................................39 Figure 4.2: Participation Rate by Weeks Since Invitation ...................................................................................................44 Figure 4.3: Continuum of Attitudes Regarding Participation ..............................................................................................46 Figure 4.4: Participation Since Time of Invitation...............................................................................................................50 Figure 6.1: GP Consultations Following a Positive FOBT.................................................................................................74 Figure 7.1: Colonoscopy follow-up by Weeks Since GP Referral by Pilot Site ..................................................................88 Figure 8.1: Pilot Governance Structures .............................................................................................................................98 Figure 8.2: Pilot Participation and Data Incompletion Rates – FOBT Result Received by the Register ..........................103 Figure 8.3: Pilot Participation and Data Incompletion Rates – FOBT Result Not Yet Received by the Register ............104 Figure 8.4: A summary of the Pilot Operations ................................................................................................................106
LIST OF TABLES Table 1.1: Number of Eligible People invited by Pilot Site.................................................................................................12 Table 3.1: People Sent Invitations by the Register .............................................................................................................31 Table 4.1: Number of participants by Pilot Site...................................................................................................................42 Table 4.2: Age Standardised participation rates by Pilot Site (Rate per 100 invitations) ....................................................42 Table 4.3: Participation Rate by Age and Sex .....................................................................................................................42 Table 4.4: Specific Reaction to the FOBTs .........................................................................................................................48 Table 4.5: Specific Reaction to Supporting Material...........................................................................................................49 Table 4.6: KAP Survey Data Indicators, 2002 Compared with 2004 ..................................................................................52 Table 5.1: FOBTs Sent Out by FOBT Type .......................................................................................................................63 Table 5.2: FOBTs Received by Status by FOBT Type.......................................................................................................64 Table 5.3: Waiting Times for Notification of FOBT Results (Days)..................................................................................65 Table 5.4: FOBT Results for Valid FOBTs ........................................................................................................................66 Table 5.5: Positivity Rates by Sex, Age and FOBT Type (all eligible participants) ..........................................................66
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Table 5.6: Positivity Rates by Sex, Age and FOBT Type for Participants Without Rectal Bleeding.................................66 Table 5.7: Positive Predictive Value - Participants with a positive FOBT .........................................................................67 Table 5.8: Positive Predictive Value - Participants with a positive FOBT – Cancers and All adenomas ...........................67 Table 6.1: GP Visits by Time of Visit and Reason for Consultation ...................................................................................73 Table 6.2: Waiting Times Between Positive FOBT Result and GP Consultation...............................................................75 Table 6.3: GP visits by age - Participants with a Positive FOBT ........................................................................................75 Table 6.4: Referral by GP for Colonoscopy - Participants with a Positive FOBT...............................................................76 Table 6.5: GP visits by age - Participants without a Positive FOBT ...................................................................................76 Table 6.6: Referral by GP for Colonoscopy - Participants without a Positive FOBT..........................................................77 Table 6.7: Waiting Times for Conduct of a Colonoscopy where there was a Positive FOBT Result ..................................77 Table 7.1: Colonoscopy Results for Participants with a Positive FOBT .............................................................................83 Table 7.2: Colonoscopy Results for Participants Without a Positive FOBT........................................................................84 Table 7.3: Colonoscopy Results for All Participants ...........................................................................................................84 Table 7.4: Visualised Whole Colon (Rate per 100 colonoscopies)......................................................................................88 Table 7.5: Number of Adequate Colonoscopies (Rate per 100 colonoscopies) ...................................................................89 Table 8.1: Summary of Pilot Site Community Mobilisation Activities ...............................................................................99 Table 8.2: Summary of Pilot Site GP Education and Communication Strategies..............................................................100 Table 9.1: Cost-effectiveness of Biennial National Bowel Cancer Screening Program Using Immunochemical FOBT (Individuals Aged 55–74 years).........................................................................................................................................107
Table 9.2: Cost-effectiveness of Biennial National Bowel Cancer Screening Program Using Immunochemical FOBT (Individuals Aged 50–74 years).........................................................................................................................................108