Do patients on oral chemotherapy have sufficient knowledge for

optimal adherence? A mixed methods study

European Journal of Cancer Care (Accepted October 2015)

A. Arber, A. Odelius, P. Williams, A. Lemanska, S. Faithfull

University of Surrey, Guildford, UK

ABSTRACT

A new treatment paradigm has emerged with many patients now receiving oral

chemotherapy as first line treatment for cancer. Treatment with oral chemotherapy

has resulted in reduced hospital costs, more autonomy for patients but with added

responsibilities for patient self-management. Little is known about patient’s

knowledge following patient education to enable optimal adherence with oral

chemotherapy. A mixed methods study was carried out using a self-report

questionnaire to patients on oral chemotherapy for multiple myeloma followed by

semi structured interviews with patients at home. Analysis identifies high rates of

adherence (92.2%) with oral chemotherapy for multiple myeloma. However

statistically significant knowledge deficits were identified, which were related to

patient ethnicity and to gender. There is the potential for non-intentional non-

adherence with oral chemotherapy due to deficits in knowledge of oral chemotherapy.

Support at home needs to include primary care practitioners such as GPs, practice

nurses and pharmacists so that timely support is easily accessible especially in the

early phase of treatment.

Keywords: Patient information, Haematopoietic, oral chemotherapy

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INTRODUCTION

As a result of innovative research in molecular biology and pharmaceutical advances

intravenous chemotherapies are now available orally to be used at all stages of cancer

treatment. Furthermore the use of long term oral maintenance therapy has contributed

towards cancer being managed as a chronic disease (Weingart et al. 2008). Systemic

anti cancer treatments taken orally offer a new treatment paradigm, which has resulted

in patients receiving outpatient ambulatory treatment, reducing hospital costs,

promoting autonomy and improving patient’s quality of life and survival (Regnier

Denois et al. 2011, Simonchowitz et al. 2010, O'Neill and Twelves 2002; De Mario

and Ratain 1998). Patients understandably prefer oral agents to intravenous therapy as

long as effectiveness is assured. Treatment with oral chemotherapy (OC) allows for

more freedom and the risks associated with venous access and intravenous infusion

devices are reduced (Liu. et al. 1997; Oakley et al. 2010). Nonetheless some patients

find the responsibility involved in self-management worrying and the reduced

opportunities for face to face communication with health care professionals is a

concern (Liu. et al. 1997). There are some risks with OC such as non-intentional

overdose and non-intentional non-adherence with therapy (Weingart et al. 2008).

However little is known about adherence and some studies provide conflicting

evidence (Chau et al. 2004; Hartigan 2003). Suboptimal adherence is reported as a

barrier to effective use of OC and addressing adherence is a priority when preparing

patients for treatment (Partridge et al. 2002).

There is a lack of consensus about safe medication practices and patient education for

OC, particularly information giving practices and monitoring of adherence (Weingart

et al. 2007). Standards related to information giving may not be consistent and it is

not known to what extent patient education strategies such as patient diaries are used

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(Oakley 2005; Skalla et al. 2004). With the increased success of treatment for cancer

and the emergence of cancer as a chronic illness, personalized information is

considered important. Effective provision of information is essential so that OCs are

optimally adhered to and treatment remains optimal. Furthermore information

provision and care should be coordinated over time and continued through the care

pathway to care at home (Thorne et al. 2013). Managing OC at home requires a

transfer of treatment related work from healthcare professionals to patients which is

termed ‘self care’ and self-management (McCoy 2009). The patient autonomy

element of self-care requires responsible and safe practice from the patient to

manage the medications and communicate in a timely way with health professionals

when problems arise. For example providing a clear description of side effects and

symptoms and issues with adherence to the clinical team. So that treatment risks are

monitored and toxicities safely managed. Therefore patients including their carers

should understand how to administer the dosing schedule, how to adhere to the dosing

schedule and know when to report problems and complications such as toxicities to

clinical staff (Hartigan 2003; Oakley et al. 2010).

Patient education about OC usually occurs during a single hospital visit prior to

commencing treatment. During this hospital visit a great deal of information is

provided face to face by medical staff supported by clinical nurse specialists as well

as the provision of written information (Chau et al. 2004, Oakley 2005). In this

article the focus is on information provision for patients with multiple myeloma

(MM). Although MM is a relatively rare cancer the current gold standard anti-

myeloma treatment is with oral medications: namely Cyclophosphamide,

Thalidomide and Dexamethasone referred to as CTD. Oral agents targeting myeloma

cells are highly effective, and have contributed to myeloma becoming a chronic

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disease which is treatable but not curable (Morgan et al. 2006). Furthermore the

survival rate for those with multiple myeloma over 5 years is increasing at the fastest

rate of all cancers in the UK (Cancer Research UK 2014). Younger patients have a

better prognosis than those who are older and MM is twice as common in black

people as in white people and Asians. The aim of the study was to identify patient’s

knowledge of their OC medications their adherence with their medication and to test

for relationships between age, gender and ethnicity in relation to knowledge of CDT.

METHODS

This is a mixed methods study consisting of a patient survey (n=64), and interviews

with two patients taking CDT. Self-report questionnaires (n=64) were given to

patients who were taking CTD therapy by clinical nurse specialists in three out-patient

clinics. The questionnaire had four sections related to confidence in taking oral

chemotherapy, knowledge of side effects of oral chemotherapy, knowledge of when

to take oral chemotherapy, what to do if side effects occurred and what to if a dose of

OC was missed. Demographic information was also collected. The questionnaire had

15 questions 13 of which were fixed choice with 2 open ended questions related to

satisfaction with written and verbal information giving. The in-depth interviews were

introduced later in the research process to further explore issues emerging from the

patient survey such as the practical aspects of managing the medications at home at a

distance from the hospital. Two patients who had completed survey questionnaires

agreed to be interviewed. The interviews were conducted around two main themes:

‘meaning of the illness and treatment’ and ‘information and support’. The two

patients (one male and one female) were recruited through one of the clinical nurse

specialists and were identified as the only patients with myeloma who were well

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enough to be approached at the time, which also reflects the generally small

population of patients with myeloma. Both patients were interviewed in their homes

and as it turned out both patients had experienced problems in managing their dosing

schedule at home.

Data analysis of the survey was conducted using IBM SPSS version 22.0 (Armonk

NY). Statistical tests were used to explore associations between each of the scores

from questions derived from the knowledge related sections and demographic

features: gender, age, and ethnic group. To compare the difference in terms of their

knowledge scores in the subgroups of patients Kruskal Wallis, Mann-Whitney U-test

and Chi-square tests were used. The interviews were transcribed verbatim. Both

transcripts were coded manually and independently by two researchers using “a

general inductive approach” ( Thomas 2006: 237).

Ethical approval for the study was obtained from the University of Surrey Advisory

Committee on Ethics, as well as from the National Research Ethics Service (NRES)

and the lead Comprehensive Local Research Network (CLRN) with sign off from the

three haematological centres involved in the study.

The aim of the study is to understand how knowledgeable patients are in relation to

their OC medications and to understand the significance of age, gender, ethnicity and

adherence behaviours in relation to knowledge of CDT.

RESULTS

Data analysis is based on 64 returned questionnaires from three research sites and two

patient interviews. A summary of the demographic details of patients participating in

the survey is presented in Table 1. The sample was broadly representative of the age

range of the population affected by MM in the UK with most patients aged over 60

5

years (48, 75%). Black ethnicity is another risk factor for MM and 23.4% of patients

came from ethnic minority backgrounds including black Caribbean, black African,

Pakistani and Bangladeshi. Myeloma is twice as common in black people as in white

people and Asians (Cancer Research UK 2014). Most of the patients with non-white

ethnicity were from one hospital site (site 1).

Table 1 Patient demographics survey questionnaire Patient Demographic information No. (%) (n= 64)SiteSite 1 33 (51.6)Site 2 23 (35.9)Site 3 8 (12.5)Gender Male 32 (50.0)Female 22 (34.4)Missing 10 (15.6)Age<60 15 (23.4)≥60 48 (75.0)Missing 1 (1.6)EthnicityWhite British 49 (76.6)Other 15 (23.4)

There were three acute hospitals with haematology out-patient clinics taking part in

the study. One hospital was in an inner city area and two were in suburban locations.

33 patients were from site 1, 23 patients were from site 2 and only 8 patients were

from site 3. Site 1 was an inner city hospital site with a very busy clinic seeing many

more patients than site 2 and 3 which were in suburban areas. Site 1 had the largest

proportion of ethnic minority patients (see Table 2 for more details).

Table 2 Age gender and ethnicity of patients

Site Age Gender Ethnicity<60 ≥60 Female Male White British Other

1 9 (14.1%) 24 (38.1%) 15 (23.4%) 15 (23.4%) 22 (34.4%) 11 (17.2%)2 5 (7.8%) 17 (26.6%) 3 (4.7%) 14 (21.9%) 19 (29.7%) 4 (6.3%)3 1 (1.6%) 7 (10.9%) 4 (6.2%) 3 (4.7%) 8 (12.5%) 0 (0.0%)

Adherence to the medication

The World Health Organisation defines adherence as the extent to which a patient’s

behaviour corresponds with the recommendations from a healthcare professional

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(WHO 2008). This is a very general definition however a more specific definition is

identified by the International Society for Pharmacoeconomics and Outcome

Research: “the degree or extent of conformity to the recommendations about day-to-

day treatment by the provider with respect to the timing, dosage, and frequency” of

medicines (Cramer et al. 2008). Most authors use the term adherence as synonymous

with observance and compliance (Bassan et al. 2013). Fifty-nine patients report

being adherent with their medications, where no doses of medications were missed

(92.2%). The same number of the patients stated that they knew when to take their

medication. Fifty-seven (89.1%) stated that they feel confident about taking their

medication. Only 4 (6.3%) people admitted that they found their medication

confusing. When asked if they understood how their medication worked 44 (68.8%)

people agreed that they understood how their medications worked. Out of these 44

people only one person admitted that they didn’t understand how the medication

worked at first but that they understood over time.

Knowledge of when to take OC

When asked about what time of day they should take their medications only 37

patients report accurate timing for all of their medications. This number represents

57.8% of patients that report that they take their medications correctly. The most

common error in understanding was in relation to Thalidomide; 10 patients (15.6 %)

reported taking this medicine in the morning rather than in the evening as

recommended. There was no statistically significant relationship found in relation to

age, gender and ethnicity and knowledge of when to take the medications. Two

patients were interviewed who were taking CTD therapy and described how

complicated it was. One of the patients interviewed describes being given

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information about when to take the medications by the medical and nursing staff but

when she got home she reports how she had to call out the GP. The patient describes

how the GP ‘was very surprised at how complicated it was’. The patient describes

feeling overwhelmed by the regime: ‘they give you the most enormous bag [of

tablets]…they hand it to you as if, you know, now go away and you know, use it’.

This patient was reliant on her GP to help her sort out the dosing schedule as she felt

overwhelmed by the responsibility once she got home despite the education provided

to her in the hospital.

Knowledge of what to do if forget to take their OC

The participants were asked what actions they should take if they forget to take their

medications. Forty two (65.6%) patients gave the correct answer that they should take

the medicine as soon as they remember on the same day and/or ring the clinical nurse

specialist. No statistical significance was found related to age, gender and ethnicity

and what to do if they forget to take their medicines. However, three respondents

report unsafe practice such as taking a double dose of their OC the next day.

Knowledge of Side effects

It is very important that patients understand the difference between those problems

that arise that can be self-managed and those that need prompt reporting to a health

care team. Patient’s knowledge of who to contact should they experience serious side

effects related to their medications was variable. Most patients correctly identified

who to contact if they were feeling nauseous or sick despite taking anti-sickness drugs

(85.5%). When experiencing tingling in fingers or toes they generally knew who to

contact (82.3%). However only 46 (71.9%) patients knew who to contact if feeling

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generally unwell but this went up to 52 (81.2%) if they had a high temperature. A

much smaller number of patients knew who to contact if developing constipation

and/or diarrhoea 42 (65.6%). Figure 1 summarises patient knowledge in relation to

who to contact if they experience side effects of therapy. A significant difference was

found regarding knowledge of who to contact if they experienced side effects and

gender, females were found to have a significantly worse mean rank than males and

this was found to be statistically significant (p=0.037).

Figure 1. Knowledge of who to contact if side effects experienced

Overall patient’s knowledge of side effects associated with CDT was found to be low.

Figure 2 summarises the knowledge of side effects known by patients. A significant

relationship was also found between knowledge about side effects and ethnicity

(p=0.007) with white British having a significantly higher mean rank score in this

area of knowledge compared to those from other ethnicities.

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Figure 2 Knowledge of side effects assocated with CTD

Support with taking medications

Nearly a third of patients (31.3%) report that they rely on a partner or family member

to support them with taking their medications. Those living alone and without good

support have been found to be non-adherent with OC in other research (Noens et al

2009). Fifty four (84.4%) patients report using a number of tools to prompt them to

take their medications with 38 (59.4%) patients using a check list, 18 (28.1%) a

calendar, 12 (18.8%) a dosset box, 5 (7.8%) used their own records and 1 patient used

an alarm. However 10 (15.6%) did not use any aid to remind them to take their

medications. There was no statistically significant difference between gender, age or

ethnicity in terms of using a medicine organizing strategy or having a family member

helping with medications. Three people mentioned that it was so important to take

their medications that always remembered and never forgot to take them and did not

need to use an aid to remind them.

10

Figure 3 Strategies used to organise tablet taking

Difference between hospitals

The three hospital sites were compared using the Kruskal Wallis test. A significant

difference was found between the hospital sites in terms of knowledge about the

timing of medications (p=0.001) and who to contact when experiencing significant

side effects (p<0.001) with site 1 having the lowest mean rank for patient knowledge

and this site was significantly busier than the other two sites and had more patients

from ethnic minorities groups and more females.

DISCUSSION

Patient’s knowledge, understanding and retention of information about OC are linked

to adherence behaviour (Bassan et al. 2013). Although patients report high levels of

adherence with medications they also identify knowledge deficits that could

unintentionally affect adherence and lead to sub-optimal adherence. Atkins and

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Fallowfield (2006) make a distinction between intentional non-adherence where a

decision is taken not to take medication and non-intentional non-adherence where a

patient misunderstands or forgets to take their medication. In this study there was

evidence that patients strived to take their medications in the way prescribed; however

there were some knowledge deficits that could lead to non-intentional non-adherence.

Patients despite reporting high rates of confidence in taking their OC were less well

informed about how their CDT therapy worked. Atkins and Fallowfield (2006)

suggest that further research should study the patients’ understanding of the mode of

action and benefits of OC from the patient perspective.

There is a requirement for patients to remember a great deal of complex information

about CDT which can be confusing. Patients therefore have many aspects of

information to recall following information giving especially during the first cycle of

therapy including managing life threatening side effects such as infection and sepsis,

when to take medications, modes related to food intake, and what to do if they forget

to take the medication or have problems with sickness and vomiting all key aspects of

optimal adherence. The results of this study suggest that patients may be at risk of

non-intentional non-adherence where they are non-adherent due to misunderstandings

or forgetfulness about timing their medication intake, which may lead to other

problems such as excessive sleepiness if Thalidomide is taken during the day rather

than at night as recommended.

Despite the fact that the patient education in OC stresses the seriousness of side

effects, which are repeated by health care providers (Oakley et al 2010), patients have

been found to avoid reporting symptoms through fears of interrupting dosing

schedules (Gerbrecht and Kangas 2004). Preoccupation with risks shape the way that

healthcare is delivered and how patient information is provided so risks can be

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effectively managed. Stephenson et al. (2004) suggest that there is a lack of attention

to the patient’s ability to adhere with medication schedules and that this is a barrier to

the doctor and nurse-patient relationship. Patient knowledge of the side effects of the

CDT was surprisingly low. Patients are not as well-informed about side effects as

expected. It is crucial that the patients have a thorough understanding of expected

side effects and their perceptions of risk are assessed. Further evidence from this

study suggest that females and those from ethnic minority groups are less

knowledgeable about the side effects of CDT and therefore may be at higher risk of

sub-optimal adherence compared to white male patients. The current research

suggests that gender and ethnicity should be taken into account in patient education

activities related to OC. Site 1 had the busiest out-patient clinic but also the highest

number of female patients and highest number of those from ethnic minority groups

and patients from this site were significantly less knowledgeable about side effects

than those from the other two sites. As each site had one clinical nurse specialist it is

possible that the CNS at site 1 had less time than colleagues at other sites to provide

patient centred information due to the large number of patient coming through the

clinic.

Around 40% of patients with MM report problems with anxiety and depression with

patients suffering symptoms such as continual bone pain, body image changes such as

loss of height, fatigue and loss of energy resulting in a reduced quality of life

(Moliatossis et al. 2011). Greater use of screening for depression and anxiety is

important for those with MM as both patients in the interviews conducted describe

feeling ‘on the edge’ and low in mood. Psychological distress has been found to be

associated with non-adherence (Lebovits et al. 1990).

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The number of prescribed medications has also been found to be relevant to

adherence with those having to take many medications developing routines to

promote adherence (Barron et al. 2007). In this study most patients were

recommended to use a spreadsheet identifying when to take their medicines and this

was recommended on all the sites of the research. Despite this some patients did not

use any prompt to remind them to take their medications. More research needs to be

done to find which strategies work best for patients and to offer more patient centred

tools that are meaningful to patients. Some suggestions identified in the literature are

use of diaries (Oakley et al. 2010), pill boxes (Ruddy et al. 2009), text messaging

(Miloh et al. 2009), and electronic pill boxes for those will low levels of literacy

(Wolpin 2009). The Multinational Association for Supportive Care in Cancer

(MASCC) identified strategies for adherence using a tool that can facilitate adherence

behaviours. The tool helps to identify issues that help and hinder adherence and

promotes patient education strategies and can be found at www.mascc.org.

Study limitations

Patients self report is used in this study and it is well known that patients may

overestimate their adherence to please healthcare professionals and more reliable

methods are preferred such as electronic counting device or the medication event

monitoring system these have not been used in the present study and should be

considered in future studies of this kind (Haynes et al. 2005). The affect of adherence

with therapy over time remains unexplored in this study and this is a limitation. In

future studies it is recommended that patients are studied over time to collect

longitudinal data of knowledge and adherence behaviour over time. Only two patients

were interviewed about self-managing their CTD therapy, which is a limitation and is

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a problem for transferability. In future studies a clearer foucs on community support

for patients on CTD is needed.

CONCLUSION

Care disparities in OC need to be recognised and a focus on high-risk individuals to

improve patient adherence. Patient education by healthcare practitioners is critical to

patient adherence with OC medications. Education should be extended to include not

only the patient (and family member) but also the GP, practice nurse and pharmacist

(O’Neil and Twelves 2002) as following information giving in the hospital setting

patients may still struggle with a complex regime once they are home and may need

to call on community support. However the monitoring of adherence remains the

responsibility of the specialist medical team supported by a named CNS. It is very

important that models of care for those taking oral therapy are researched and the

infrastructure to support adherence and self-management is developed. However the

infrastructure to support optimal adherence is reported to be lacking (Oakley et al.

2010). Innovative approaches to support patient’s self-management activities are

needed based on assessment of individual patient need, level of understanding and

assessment of risk. Professionals need to extend patient education activities to a

range of resources to help patients understand and recall OC education; including

technological innovations and prompting techniques such as text messaging and

supplementary ways of delivering information such as use of pictures (Linn et al.

2012), diaries (Oakley et al. 2010) as relying on standard techniques such as face to

face information giving and written handbooks are insufficient to enable thorough

knowledge and understanding for self management of OC.

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Adherence needs to take a more central part in patient education activities

prior to and during treatment with OC

Special attention needs to be given to those from ethnic minority groups and to

females as they have lower scores in knowledge levels

Screening of high risk patients need to be carried out including monitoring of

anxiety and depression and additional support in the community such as from

pharmacists and GPs

Family support needs to be assessed and carers need to be involved in patient

education activities as well as patients

e health options could be used to prompt patients and cue them to take their

medication and report side effects promptly

ACKNOWLEGEMENTS

We would like to thank the patients who took part in the survey and interviews and all

the staff who supported the research at the three hospital sites. This study was made

possible by a generous grant from the charity Myeloma UK.

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