demographic and clinical characteristics and perceived...
TRANSCRIPT
Title: Patient Factors and Perceived Barriers in Attending Diabetes Education Programs
First Author: Enza Gucciardi, MHSc PhD, School of Nutrition, Ryerson University, Toronto, Canada
Co-authors:
Vivian Wing-Sheung Chan, HBSc, PhD (c), Department of Psychology, University of Waterloo, Waterloo, Canada;Brian Kam Chuen Lo, BASc, School of Nutrition, Ryerson University, Toronto, Canada;Mariella Fortugno, BASc, School of Nutrition, Ryerson University, Toronto, Canada;Stacey Horodezny, BAA RD, Trillium Health Centre, Toronto, Canada Susan Swartzack, BScN MPA RN, Mississauga Halton Local Health Integration Network, Toronto, Canada;
Corresponding Author Contact Information:
Enza Gucciardi, PhDAssistant Professor School of Nutrition, Ryerson University350 Victoria Street Toronto, Ontario, M5B 2K3Phone: 416-979-5000 ext. 2728Fax: [email protected]
Acknowledgement of Financial Support
No financial support was provided for the completion of this study.
Word Count: 4580
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Abstract
Objective: This study aimed to explore patient utilization of and barriers to attending diabetes
education programs (DEPs) in Southern Ontario, Canada.
Method: Internet questionnaires were completed by 221 individuals living with diabetes in the
Peel-Halton regions of Ontario.
Results: Approximately 67% of respondents attended a DEP. The majority of them reported
gaining a better understanding and ability in managing diabetes. However, regular DEP follow-
up was relatively low. Reasons for finding DEP visits unhelpful include lack of DEP awareness,
insufficient individualized services, and unwelcoming staff. Common reasons for individuals
never attending a DEP include diabetes education provided by primary care physicians (PCPs),
lack of DEPs promotion from PCPs, patients’ high level of confidence in diabetes self-
management, and inconvenient DEP locations and operational times. Most participants relied on
their PCPs for managing diabetes, but PCPs were not frequently providing comprehensive
diabetes self-management support.
Conclusions: DEP utilization appears to improve patients’ perception of their ability to manage
the disease. Creating better partnerships between PCPs and DEPs could improve DEP referrals
and patient participation in DEPs. Delivering more accessible and patient-oriented services could
improve patient retention at DEPs.
Key words: attendance, diabetes self-management education, diabetes education programs, patient satisfaction, and Diabetes Mellitus
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Introduction
Diabetes Mellitus is a chronic illness that requires a lifelong commitment to complex lifestyle
modifications involving nutrition management, a physically active lifestyle, regular self-
monitoring of blood glucose, and adherence to medications and/or insulin therapy (1). Proper
management of these lifestyle modifications has been shown to reduce the risk and progression
of diabetes complications (2-7). In order for patients to manage their diabetes effectively, they
must become experts in the management of their illness. However, achieving and sustaining
effective management is challenging, and only about half of Canadians living with diabetes are
able to meet the recommended target for glycemic control (<7% Hemoglobin A1c [HbA1c])
(8). As a result, diabetes self-management education (DSME), which is primarily delivered at
diabetes educations programs (DEPs), is recommended by clinical practice guidelines as a
valuable resource that teaches patients the skills to actively participate in the management of
their illness and supports their efforts (1). DSME is intended to identify patients’ management
issues, priorities, goals, and barriers, as well as develop management plans and problem-solving
skills for optimal management of the illness (9;10).
Despite the documented benefits of DSME in improving self-care behaviours (3-7;11),
glycemic control, lipid profiles, and blood pressure, which reduce both the risk and progression
of diabetes complications (11-16) while lowering health care costs (12;13) and improving
quality of life (3;6), the literature suggests that DSME delivered by DEPs is underutilized in
both Canada (14;15) and the United States (16-21). Studies in Ontario suggest that 25 to 30% of
individuals with diabetes participate in DSME (14;15), and figures from the United States found
that only one-third to one-half of diabetes patients participate in DSME (16-21).
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As most DEPs require a physician’s referral, primary care physicians (PCPs) are seen as
gatekeepers to DEP participation (22). Even though PCPs face barriers to caring for diabetes
patients, such as lack of time (23-26), knowledge (24-26) and resources to provide self-
management support for diabetes patients (24; 25), they are still not likely to refer all or most of
their patients to DEPs (24;27). A recent Canadian study found that less than one-half of PCPs
referred all their patients with diabetes to local DEPs; the reason most commonly reported by
PCPs was patients’ unwillingness to attend (24). In the U.S. literature, PCPs’ reasons for not
referring patients to DEPs include lack of awareness of existing programs, disagreement with
the content of DEPs, and concern of losing patients (28). Moreover, U.S. studies have found
that patient barriers to DEP attendance include accessibility issues (such as transportation
difficulties, inconvenient location, or program scheduling), long class hours, and high cost
(17;29;30). Patient attitudes, such as misunderstanding the seriousness of diabetes, lack of
motivation, denial or fear of the disease (29), scepticism concerning the benefits of DSME (31),
and greater priorities besides diabetes management (31), are also common barriers to attending
DEPs. Finally, the delivery structure of DSME, such as the lack of individualization, language
barriers, and culturally inappropriate programming, can affect the use of DEPs (17;30;32).
Research on patient perceptions of and barriers to attending DEPs has been primarily limited to
studies in the United States. Further exploration of these issues within a Canadian context is
necessary to identify appropriate strategies to improve the delivery of, access to, and use of
DSME in Canada. This research (a) describes the utilization patterns of DEPs; (b) explores
patient-perceived barriers to participating in DEPs; and (c) investigates patients’ perception of
their PCPs’ role in diabetes self-management care and support.
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Methods
The study was conducted between August and December 2008 in the Peel and Halton regions of
southern Ontario, Canada which includes the large suburban City of Mississauga and Town of
Oakville. Recruitment targeted both individuals with diabetes who were and were not using
DEPs in the Peel-Halton regions through flyers distributed in the community and word-of-mouth
by healthcare providers (physicians, nurses, dietitians, and pharmacists) who worked in DEPs or
in the community. Advertisements for the survey were also placed in local community
newspapers (i.e., the Mississauga News and the Oakville Beaver). Patients were given a
description of the survey and a consent form prior to participation. Questionnaires were
completed by participants using an Internet survey link (Survey Monkey) posted on the
Mississauga Halton Local Health Integrated Network’s (MH-LHIN) website.
Survey questions, developed in conjunction with the MH-LHIN Diabetes Education Task Group,
were based on a thorough literature review on the topic of patient utilization of DEPs. The
questionnaire incorporated both open and closed-ended questions. Variables included
demographic information, health conditions, relationship with family physicians, diabetes self-
management skills, acceptance of DSME, frequency in using DEPs, and barriers to using DEPs.
Other questions addressed the usefulness of DEPs and suggestions for improving DEP services.
All analyses were conducted using Statistical Package for Social Sciences (SPSS version 14.0,
IBM, Chicago, Illinois). Frequency counts and percentages were tabulated for all responses.
Open-ended questions and all “Other” responses were sorted into categories and themes by two
of the authors (VC and BL). Any discrepancies were resolved by the first author (EG).
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Results
Table 1 presents demographic information of the 221 respondents who completed the
questionnaire. More than a third (38.3%) were between 50 and 64 years old; most had type 2
diabetes (81.8%); many had lived with diabetes for at least 11 years (37.3%); less than one-fifth
had an annual household income greater than $100,000 (17.9%); and most had at least some high
school education (86.4%). On average, the respondents had 2.64 (SD=1.80) other health
conditions.
Diabetes Resources Used by Patients
The most common resources participants reported using for reliable diabetes and other medical
information were: family physicians (79.0%), diabetes centres (41.1%), pharmacists (30.4%),
endocrinologists (27.6%), the Internet (27.1%), and organizations such as the Canadian Diabetes
Association (22.9%).
Utilization Patterns of DEPs
Two-thirds of the participants had previously used DEP services (66.7%); a similar percentage of
participants were aware of the DEP in their region (64.5%). Participants had first attended DEPs
because they had recently been diagnosed with diabetes (67.9%), had poor glucose control
(9.3%), needed to start insulin treatment (7.9%), had experienced a change in diabetes treatment
(5.7%), or had an illness or infection (2.1%). Of these respondents, 38.1% attended regular
follow-up appointments, 32.4% attended only when they felt they needed to, and 29.5% had
attended just one appointment. The majority of these participants were referred by their regular
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family physicians (72.3%); others had been referred by a specialist or other health professional
(21.9%), a small number were self-referred (4.4%), or had been referred by a walk-in clinic
(1.5%). After attending a DEP, most participants reported a “much better” or “a little more”
understanding about the nature of diabetes (92.5%), as well as how to keep themselves healthy
(90.4%), and how to cope with their diabetes (88%), compared with their understanding before
their visit.
Patient-perceived barriers to attending DEPs
Approximately 6% of participants indicated that the DEP was not helpful. These respondents
cited the lack of specific tailoring of the program to their needs (33.3%), perceived insensitivity
on the part of care providers (22.2%), perceived futility of the service (22.2%), the sense that
attendance was not a priority (11.1%), or the feeling that their disease was not severe enough to
make attendance worthwhile (11.1%) (Figure 1).
Reasons for never attending a DEP as reported by study participants are listed in Table 2 and
include: receiving diabetes education from family physicians (48.4%), lack of information about
DEPs from PCPs (32.3%), already having enough information and support to self-manage their
diabetes (21.0%), unsuitable hours of DEP operation (11.3%), lack of parking (6.5%), and long
waiting lists (6.5%) (Table 2).
Reported Diabetes Care Provided by Physicians
Most patients reported that they had a regular family physician (98.5%), whom they had visited
in the previous 6 months (91.3%). When patients were asked to describe their relationships with
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their family doctors in the past 12 months, they stated that their physicians “most of the time” or
“almost always” provided information or details about medications and lab results (71%), asked
patients if they had checked their feet or blood pressure regularly (54.9%), informed patients on
how often they should have their eyes examined (50.3%), asked what the patient would like to
discuss about diabetes in the visits (46%), set goals with the patients to manage their diabetes
(41.5%), or asked patients how their work, family, or social situations influenced self-
management of their diabetes (27%).
Discussion
Of the participants in our study, 66.7% attended a DEP. This percentage is high compared to
other reported usage of DEPs in Ontario (25 to 30%) (14;15), and in the U.S. (33 to 50%) (16-
21;33). Most respondents attended a DEP when they were first diagnosed with diabetes, had poor
glucose control, or needed to start insulin. These three circumstances demonstrate patients’ needs
for self-management education or re-education on self-care practices. Supporting this finding, a
Canadian study also found that patients who were recently diagnosed with diabetes were more
likely to attend a DEP (15). Similarly, Peyrot et al. (28) found that patients also used DEPs
when they wanted to know more about their diabetes, when their diabetes worsened, when they
started a new medication, or when they had a new physician.
The objectives of DSME according to the Canadian Diabetes Association 2008 Clinical Practice
Guidelines for the Prevention and Management of Diabetes is “to increase the individual’s
involvement in, confidence with and motivation to control their diabetes, its treatment and its
effects on their lives” (1). It is promising to observe that the majority of the DEP participants in
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our study reported that they gained a better understanding of diabetes and increased their ability
to manage and cope with their disease after their DEP visit(s). However, 6% of patients in our
study were either dissatisfied with the DEP services in their region or felt that the service was not
helpful or necessary. Although efforts have been made to advocate for patient-centered care
through clinical practice guidelines recommending that DSME be customized according to each
patient’s needs and concerns (1), a small proportion of patients’ education needs are not being
met. Previous research suggests that DSME needs to be tailored to patients’ individual needs in
terms of age, culture, insulin use, co-morbidity, type of patient care, health literacy level, and
physical limitations, in order to increase patient use of DSME (17;29;34).
Other patient reasons for not attending DEPs, such as the perceived futility of DEP services, the
low priority accorded to DSME, and low perceived severity of the disease, are common factors
identified in the literature for DEP attrition (35). According to the Health Belief Model, when
patients do not consider the severity or consequences of diabetes to be of much importance, they
are unlikely to change any health-related behaviours, including the use of self-management
programs (36-39). Furthermore, patients’ lack of confidence in the benefits of DSME has also
been identified as a barrier in attending DEPs (31). These factors could be addressed by PCPs
before making a DEP referral, in order to influence patient perceptions and increase
participation in DEPs. PCPs can discuss with patients the benefits of DSME, as well as the
severity and progressive nature of diabetes, in order to encourage patients to engage in lifestyle
modifications that will help them to manage the disease. Furthermore, DEPs need to assess the
needs of their patients to ensure that programs are relevant, appropriate, and timely based on
patients’ diabetes knowledge and existing self-management skills. For example, PCPs should
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assess patients’ knowledge of diabetes before referring them to DEPs and communicate this
information to the diabetes educators who provide DEP services, so that patients are not being
given redundant information.
The most common reasons for participants’ never attending a DEP, include already receiving
diabetes education from their PCPs, a lack of DEP information received from PCPs, high patient
confidence in their existing self-management skills, and accessibility barriers of the DEP (i.e.,
hours of operation, lack of parking, and long waiting lists). These findings are similar to those
found in the U.S. literature (29-31). Our previous study examining referral practices and factors
influencing referrals by PCPs to DEPs in the same geographic region identified similar
accessibility barriers as reported by PCPs (24). To some extent, the reasons why PCPs did not
refer patients to DEPs in the previous study overlap with patients’ own reasons for non-
attendance in the current study, which include PCPs providing patients with diabetes education,
long waiting lists, and inconvenient locations and times of services (24). Our results also support
the common U.S. finding that patients’ perceptions of receiving adequate education from PCPs
and having enough information and support to self-manage the disease is a major reason for not
participating in DSME (28;31). When patients felt a high level of confidence in managing their
disease, they tended not to recognize the additional benefits of DSME (17;40). Despite the
benefits reported for those who use DSME, some individuals may be managing well and meeting
their glycemic target, and therefore they do not see any further benefits in participating in
DSME. However, further research is warranted to examine physiological data to verify whether
those who are confident in their management and feel that they do not need to attend DEPs are
within the recommended clinical targets for diabetes. Overall, there appears to be a need for
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better promotion of DEPs to PCPs. Developing partnerships with PCPs can better serve patients
by increasing access to a multidisciplinary care team, which is recommended for all individuals
with diabetes by the Canadian practice guidelines (1).
Although the majority of our study participants relied on their PCPs for diabetes information and
almost half did not attend a DEP because they were already receiving DSME from their PCP, the
provision of comprehensive diabetes self-management support from PCPs appears to be
infrequent. When describing their relationship with their PCPs, most study participants reported
receiving details about medications and lab results frequently, while only about half of
participants stated that PCPs make inquiries about blood pressure or feet checks and suggest
regular eye examinations most of the times or most always. Furthermore, only about a quarter
of the participants had the opportunity to discuss how their work, family or social life affected
their diabetes self-management with their PCPs or how to set self-management goals. These
findings are not surprising; as mentioned, the literature strongly substantiates that PCPs are
unable to provide the highest level of care for patients with diabetes and deliver education and
lifestyle-modification strategies necessary for chronic disease management (27;41-43). This is in
part due to their lack of time to assess complex cases and limited knowledge of insulin starts and
adjustments (24). Effective management of diabetes requires a high degree of patient
commitment to self-management, and thus ongoing self-management education, training, and
support is critical. Therefore, patients solely relying on their PCP for DSME are likely not
receiving the full range of services and resources that would facilitate effective diabetes self-
management.
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A limitation of this study is the small sample size, as this study was conducted in a specific
region in Ontario, thereby limiting the generalizability of the results to all Canadians living with
diabetes. In particular, caution should be taken when interpreting patients’ reasons for not
finding DEPs helpful, as they represent only 6% of the sample population. Although greater
distribution of the methods of recruitment and the use of incentives would have increased our
sample size to obtain a more representative sample of our target population, there is no reason to
assume this region of Ontario is different from other culturally mixed urban centers in Canada.
Furthermore, we were not able to estimate a response rate, given the type of recruitment efforts
used (i.e., through DEPs, internet and regular mail). Non-response bias is a possible limitation to
our study as we could not compare respondents with non-respondents due to the type of
recruitment efforts used and to participant anonymity.
Another limitation of our study was that our survey was conducted in English only, and thus we
were not able to assess the utilization patterns and barriers to using DEPs among non-English-
speaking patients in the region. For instance, issues such as language and cultural tailoring were
less identified as barriers in our study, but often reported in the literature (35;44;45). However, it
is worth noting that half of our sample was not born in Canada, so we were able to capture a
proportion of immigrant Canadians, who on average tend to have higher rates of diabetes than
those born in Canada (12;13;46). Future research in this area can contribute to a better
understanding of DEP usage by surveying a larger and more representative population, including
non-English speakers, to further validate our findings. Also, using qualitative approaches can
provide comprehensive data on patient-perceived barriers that may not be reflected in researcher-
designed surveys. In addition, a more complete understanding of DEP patterns of utilization in
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Canada can be achieved by also assessing Canadian PCP and diabetes educators’ perspectives on
DEP utilization.
Conclusion
Diabetes is a chronic and progressive disease that requires continuous self-management and
support, particularly given patients’ changing needs throughout the lifecycle. It is well
established that DSME benefits those living with diabetes and that long-term regular use is
crucial in effective management and reaching clinically recommended targets (47;48). This study
provides valuable insight into the utilization of DEPs and the reasons identified by patients for
not attending. In the Peel-Halton Region of Southern Ontario, the majority of those who were
surveyed attended DEPs and they are generally satisfied with the services. Those who did not
find DEPs helpful found DEPs lacking an individualized approach in meeting patients’ specific
needs, while those who never attended DEPs appear to be satisfied with the information they
were receiving from their PCPs. As patients mostly receive diabetes information from PCPs,
DEPs need to promote themselves to PCPs to increase PCPs’ awareness of the benefits of these
services.
The establishment of partnerships between DEPs and PCPs could increase patients’ access to and
support from a multidisciplinary team, as recommended for the management of diabetes by the
Canadian practice guidelines (1). The creation of such partnerships would also provide a
knowledge exchange opportunity by helping PCPs improve their own knowledge and confidence
in managing patients with diabetes and would encourage the referral of patients with more
complex needs to specialized care and education. DEPs need to enhance their efforts to increase
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the visibility, relevancy, and accessibility of their services within their local communities. Future
research should examine alternative strategies and models of care that overcome patient DEP
barriers. .
Acknowledgements
No acknowledgements to declare
Author Contributions
SJS, SH and EG contributed to the conception and design of the project. EG, VC and BL analyzed the data. EG, VC, BL and MF wrote the first draft of the manuscript. All authors reviewed the draft critically for important intellectual content and approved the final version to be published.
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Tables
Table 1. Demographic characteristics
Characteristics n (%) or mean +/- (standard deviation)Sex (n=203)Male 104 (51.2)Female 99 (48.8)Age Group (n=206)18 to 34 Years 14 (6.8)35 to 49 Years 31 (15.0)50 to 64 Years 79 (38.3)65 to 74 Years 45 (19.8)75 to 84 Years 35 (17.0)84 Years of Age and Older 1 (1.0)Type of Diabetes (n=220)Type 1 Diabetes 30 (13.6)Type 2 Diabetes 180 (81.8)Pre-diabetes 7 (3.2)When first diagnosed with diabetes (n=217)Within one year 23 (10.6)1 to 5 years ago 62 (28.6)6 to 10 years ago 51 (23.5)11 or more years ago 81 (37.3)Mean Number of Other Health Problems (n=221) 2.64 +/- 1.80Annual Household Income (n=190)Under $20,000 25 (13.2)$20,000 to $29,999 20 (10.5)$30,000 to $39,999 17 (8.9)$40,000 to $59,999 29 (15.3)$60,000 to $79,999 15 (7.9)$80,000 to $99,999 20 (10.5)$100,000 and Over 34 (17.9)Highest Level of Education Reached (n=184)Less than high school 25 (13.6)Competed high school 54 (29.3)Completing undergraduate university or college degree 10 (5.4)Competed undergraduate university or college degree 78 (42.4)Completing post-graduate university degree 1 (0.5)Completed post-graduate university degree 16 (8.7)Country Born In (n=208)Canada 110 (52.9)Other 98 (47.1)
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Table 2. Reasons for never attending DEPs (Check all that applies) (n=62)
Reasons Frequencyn (%)
Your own doctor provides you with diabetes education 30 (48.4)Your doctor does not promote the diabetes centre 20 (32.3)Perceive enough information and support to self-management own diabetes
13 (21.0)
Time unsuitable (i.e., no evening and weekend appointments) 7 (11.3)Parking issues 4 (6.5)Long waiting list 4 (6.5)Diabetes not serious enough to visit a diabetes centre 3 (4.8)Program is not offered in a language you feel most comfortable in speaking
3 (4.8)
You are too ill to attend 3 (4.8)Location is hard to get to 3 (4.8)Diabetes education is a low priority for you 1 (1.6)
20
Figures
Figure 1. Reasons for not finding DEP visit(s) helpful (n=9)
33%
22%
22%
11%
11%
Reasons for not finding DEP visit(s) helpful
DEP need independent/specific tailoringInsensitive interactions with professionalsPerceived futility of the serviceUnmotivated or not a priorityCondition is not considered as severe
21