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Barriers to attendance in diabetes education centres: A systematic review

The use of structured patient education is widely acknowledged as one of the strategies for diabetes management in the UK. Nevertheless, the delivery of education programmes such as DAFNE (Dose Adjustment For Normal Eating) and DESMOND (Diabetes Education and Self-Management for On-going and Newly Diagnosed) in the primary care setting is often challenged by decreasing attendance over time (known as attrition). The aim of this systematic review is to identify the reasons and barriers associated with non-attendance in diabetes education centres by examining the empirical evidence.

Studies have identified the beneficial effects of diabetes education in promoting self-care knowledge and improvements to diabetes management. Structured diabetes education programmes can improve diabetes knowledge among those who have the condition (Deakin et al, 2006; Rygg et al, 2012) and reduce complications and hospitals admissions (Cinar et al, 2010; Karakurt and Kasikci, 2012). Tang et al (2006) have also shown that diabetes self-management education can have a positive health outcome, particularly in improving knowledge, blood glucose monitoring, attitudes towards diet and exercise, glycaemic control, adherence to medication and coping abilities, and a study by Khunti et al (2012) based on data from the DESMOND (Diabetes Education and Self-Management for On-going and Newly Diagnosed) programme concluded that diabetes education led to improvements in some illness beliefs.

NICE guidelines (2003; 2009) recommend structured patient education (SPE) for every newly diagnosed person with diabetes with an annual update. Similarly, Standard 3 of the National Service Framework for Diabetes emphasises the importance of education and empowerment for people with diabetes (Department of Health [DH], 2001). However, despite the evidence supporting the benefits of SPE and the government directive, uptake among people with diabetes still varies across the country (DH, 2007). I aimed to identify the barriers associated with attendance to diabetes SPE through a systematic review of the literature.

The health-related databases searched were EBSCOhost, CINAHL, Medline, Ovid, EMBASE, PubMed and the Cochrane Library.In addition to using various electronic databases, articles were selected manually from the references of key articles.

The search terms used were “diabetes self-management education”, “attrition”, “drop-out”, “missed appointment”, “did not attend”, “barrier to attendance”, “non-attendance” and “diabetes education”. The Boolean operators “and” and “or” were used to join the key words such as “diabetes” with “self-care management”, “attrition” or “missed appointment” to broaden the search, while “not” was used to narrow and exclude some resources.

Table 1 shows the eligibility criteria for the current systematic review. The criteria included articles that investigated non-attendance in people with diabetes and the barriers to attending SPE. The articles had to be published in English, be peer-reviewed and could be primary research papers or systematic reviews. Studies on non-attendance in relation to other disease conditions or settings (e.g. non-attendance to routine appointments with healthcare professionals) were excluded. Comprehensive searches from the earliest possible date to 31 July 2013 were conducted.

The initial searches identified 1704 publications (EBSCOhost 386; CINAHL 538; Medline 311; Ovid 224; EMBASE 233; PubMed 12) that were informative but not appropriate for the review based on the inclusion criteria. No publications were identified through the Cochrane Library. Fourteen articles from the initial searches met the inclusion criteria (Table 2), and all the articles were either qualitative or quantitative research articles published in a peer-reviewed journal. The Critical Appraisal Skills Programme (CASP) tool (Public Health Resource Unit, 2008) was used as a framework to judge the validity and relevance of the shortlisted articles. The key features of each article that met the inclusion criteria are displayed in Table 3.

The 14 articles consisted of nine survey studies, three retrospective studies (Articles #1, #2, #4), one controlled experimental study (Article #14) and one systematic review (Article #5). The majority of the studies adopted a descriptive approach and used various data collection methods such as questionnaires, interviews and retrospective studies of medical records. Six of the 14 studies were conducted in Canada, five in the USA, one in Germany and one in Turkey. The systematic review by Gucciardi (2008) selected 14 research articles from the US, Japan, New Zealand, the Netherlands, Canada and the UK.

From the initial database search, four articles were of UK studies conducted between 1983 and 1992 (Scobie et al, 1983; Hammersley et al, 1985; Lloyd et al, 1990; Archibald et al, 1992). However, these studies did not meet the inclusion criteria for the current systematic review because they focused on non-attendance to hospital clinic appointments instead of non-attendance to SPE for diabetes. The four UK studies were conducted before the advent of key policy documents such as the National Service Framework for Diabetes (DH, 2001) and NICE guidelines (2003; 2009), which recommend SPE in England. The search results from this systematic review show that non-attendance is not a new phenomenon as studies on the subject date back over two decades in America (e.g. Graber et al, 1992). There is limited documentation on this particular phenomenon in the UK.

Participant sample
The participant sample sizes of the studies in the 14 articles varied widely. Rhee et al (2005) had the largest study population (605 people with diabetes attending a diabetes clinic for an initial visit) while Uitewaal et al (2005) had the smallest sample size (45 attendees with diabetes). With the exception of the systematic review by Gucciardi (2008), which had 1704 participants, the total participant sample size for this systematic review was 3926: 3527 (89.8%) people with diabetes who attended the hospital for diabetes education sessions, 256 (6.5%) non-attenders and 143 (3.6%) practitioners.

Twelve of the articles solely sampled participants of diabetes SPE programmes, while Temple and Epp (2009) surveyed attenders and non-attenders of diabetes and heart education programmes. One American study (Article #12) surveyed the perspectives of practitioners with membership to a diabetes educators association.

Barriers to attendance
All the studies explored the reasons for non-attendance to diabetes SPE; some focused on  the association between baseline characteristics of the non-attenders, while others investigated attendance barriers in general.

The reasons people with diabetes gave for not attending diabetes education programmes were reported in the 14 articles eligible for this systematic review. The most common reason for non-attendance was a low perception of the seriousness of diabetes, which was reported by half of the articles (Articles #3, #5, #6, #7, #9, #12, #14). Another common barrier for attendance was a low perception of the benefits of attending diabetes education sessions (Articles #3, #5, #6, #9, #11, #12).

Multiple studies found that logistical factors such as transportation (Articles #3, #5, #13), distance  to venue (Articles #2, #5, #11) and travel expenses (Articles #3, #5, #11) were a hindrance to attendance. An inconvenient time and location of SPE sessions were reasons for non-attendance in the survey carried out by Gucciardi et al (2012). The results of three studies indicated that the type of medical insurance cover and the financial implications of attending the education sessions were also potential barriers (Articles #3, #5, #11). Three studies reported that participants stated there had been a lack of adequate publicity for the sessions, which was why they had not attended (Articles #3, #5, #13). Gucciardi (2008) identified an inability for participants to contact the clinic as a barrier for attendance, and Schafer et al (2013) reported that some participants had negative feelings about the education sessions being conducted in a group environment, such as some people finding the group environment intimidating. A number of studies identified work-related problems as a factor contributing to non-attendance to diabetes SPE, such as not being able to take time off (Articles #5, #11, #13).

Previous exposure to diabetes education (Article #6), insensitive interaction with healthcare professionals providing the education class (Article #9) and a long waiting list (Article #9) were also barriers for people to attend diabetes SPE.

Participant baseline characteristics
Some of the articles investigated whether there was an association between participant baseline characteristics and non-attendance. Male gender and smoking (Articles #1, #2, #8), being over 65 years of age (Articles #4, #6, #10), inability to adhere to weight loss (Article #8) and having diabetes for over 5 years (Article #14) were reported as contributory factors to non-attendance. Graber et al (1992) and Benoit et al (2004) suggested that some smokers dropped out of diabetes education programmes perhaps because the session encouraged smoking cessation. Rhee et al (2005) and Schafer (2013) both reported poor vision and hearing as a barrier to attendance.

Two studies also stated that family problems (Articles #5, #11), forgetting to attend (Articles #5, #13) and the feeling that seeing a family physician provided the same level of diabetes education (Articles #5, #6) prevented some respondents from attending the diabetes SPE. Other barriers reported by a single study included when participants did not have English as a primary language (Article #4). Three of the 14 research articles reported that participants preferred for physicians to manage their medical condition (Articles #5, #6, #11), while three studies found that a low level of education was associated with a higher rate of non-attendance (Articles #3, #10, #11). Failure to attend the session due to ill health (Articles #5, #9, #10) was identified by three studies.

Discussion of findings
Based on the results, I conceptualised the reported barriers under four broad areas: personal difficulties, perceptions and attitudes of people with diabetes, communication and motivation (Table 4).

Theme 1: Personal difficulties
The majority of the articles reported that personal difficulties were a barrier to attendance. Almost all of the studies identified personal difficulties such as work-related problems, family problems, illness, access to transportation, distance to SPE centre, travel expenses and the sessions occurring at an inconvenient time or location. Several other authors have identified similar personal difficulties as a barrier to attendance in general clinical practice, such as forgetfulness, being too busy, language problems and poor vision and hearing (Stone et al, 1999; Hamilton et al, 2002; Zailinawati et al, 2006).

Three US-based studies from this systematic review (Graziani et al, 1999; Sprague et al, 1999; Benoit et al, 2004) identified insurance status as a barrier to accessing and attending education sessions. This is not a major barrier in the UK as the healthcare system is different to the US (Kenny, 2014). The NHS is largely funded by national taxation (Baggott, 2010) rather than by individuals, so non-attendance at UK diabetes SPE centres has negative resource implications for clinical commissioning groups and service providers.

Theme 2: Perceptions and attitudes of people with diabetes
Helman (2007) acknowledges the influence of individual perceptions and beliefs on people’s choice of health intervention, and this extends to perceptions and attitudes towards health education. Some participants in the current systematic review failed to attend the education sessions owing to their perceptions about the nature of diabetes, their perceived benefits of the session and their belief about the level of knowledge they possessed. The impact of negative perceptions on seeking and attending health education sessions has been long-established (Hammersley et al, 1985; Glasgow et al, 1997).

Another perception and attitude that was reported to affect attendance of self-management education sessions was the perception that it is the physician that manages an individual’s diabetes with little or no input from the person with diabetes (Schafer, 2013). Metcalfe (2005) stated that the traditional paternalistic approach to care by the NHS is outdated for people with long-term conditions in terms of preventing unnecessary admissions and improving quality of life and independence. Rana and Upton (2009) also stated that patient empowerment entails involving individuals in the management of their care, which is a key factor in providing good care and engaging with the patient.

Theme 3: Communication
The current systematic review found that some respondents did not attend the education session because of poor communication. These barriers included the participants’ inability to speak or read English very well, an inability to contact the clinic, participants not being aware of the service and reported insensitive interactions with the healthcare professionals running the sessions. In some cases, the participants appeared to have been absent owing to the appointment having been booked a long time ago (Gucciardi et al, 2012).

The benefit of prompt and effective communication between patients and care providers is well documented in the literature (Collin, 2009; Webb, 2011). While barriers to attendance relating to communication may vary, the onus is on the healthcare professionals to enhance effective communication to aid attendance.

Theme 4: Motivation
Individual motivation impacts on attendance: some participants forgot the appointment, some people were too busy to attend and some were simply not interested in the education programme. Others cited lack of time or lack of familiarity with the centre or the service as factors that prevented them from attending the sessions. A well-motivated learning experience may alter individual behaviour; however, Schafer et al (2013) emphasised the importance of motivation in diabetes education by saying that the success of the programme depends on the willingness of the individuals to engage with the education. Self-care management requires willpower; therefore, motivation is crucial to diabetes education programmes.

Limitations of the review
A key methodological weakness of this systematic review is that the majority of the participants studied were people who attended diabetes education centres rather than those who did not. It is possible to understand the reasons for missed appointments among attenders; nevertheless, the motivation for attendance in this group versus non-attenders may differ. The 14 studies selected for the systematic review had low sample sizes, lacked probability sampling of participants and included retrospective data. Therefore, focusing on attenders and methodological limitations reported makes it difficult to draw firm conclusions.

A major limitation was that most of the available studies were from countries outside the UK. These countries have a different funding approach (mostly private health insurance, based on single practice and of short duration) and education systems. Therefore, considering whether the barriers to attendance are relevant to the UK is difficult. A recent UK study which aimed to identify the barriers associated with attendance in diabetes education centres presented at the 10th National Conference of the Primary Care Diabetes Society in Birmingham in November 2014 had similar findings (Lawal, 2014). The poster presentation illustrated how the study used a postal questionnaire to elicit data from 105 defaulted patients who were referred for structured patient education in four diabetes education centres in the South East of England. The findings of the study also identified perceptions and beliefs of patients, personal problems, inconvenient location and time as barriers, among others.

Implications for practice and research
Although there are several international research studies on non-attendance to diabetes education, a significant number of studies surveyed attenders while very few surveyed the views of non-attenders. The paucity of studies in this area may be attributed to the fact that people who fail to attend hospital appointments are difficult to access. According to a systematic review carried out by Ajay and Rubin (2003), investigating reasons for non-attendance in a primary care setting presents some obvious methodological issues because this group of people might not be willing to participate in research and may see it as being confrontational if not handled with care.

Based on the results of this systematic review, the key barriers to attendance are work, illness, language problem, distance, finance, lack of interest, low perception about the seriousness of the medical condition and the benefits of the session. Consequently, strategies to promote attendance include offering the education service in the community nearer to the patient and offering various choices of time such as evenings and weekend sessions. Also, the patients need to assume more responsibility for their health and the healthcare practitioners need to influence patients’ beliefs and attitudes that are necessary to promote motivation and commitment.

An ageing population and lifestyle changes have caused an increase in the prevalence of long-term conditions, of which diabetes is one. This has led to a growing pressure on the NHS. Equally, the challenge to achieve good health has caused a paradigm shift from the traditional paternalistic approach to long-term condition management to one of patient empowerment and self-management. This can be achieved through education sessions; however, this can be problematic when the attrition rate to SPE is high. Understanding the barriers to attendance for people with diabetes is crucial in developing ways to improve care and engagement with people who have diabetes. This review has established the need for further work and discussion to promote attendance to diabetes education sessions.

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