Identifying Groups of Nonparticipants in Type 2 Diabetes Mellitus Education

Objectives: Patient education is a compulsory element of the nationwide disease management program (DMP) for type 2 diabetes mellitus in Germany. However, a considerable proportion of patients do not attend diabetes self-management education courses. Therefore, the purpose of this study was to describe patient-reported reasons for nonparticipation and to identify typical subgroups of nonparticipants in order to improve recruitment strategies.

Study Design: The authors performed a cross-sectional observational study on 165 participants and 132 nonparticipants in diabetes education using a postal survey and chart review.

Methods: Participants and nonparticipants were compared using 2-sided t tests and χ² tests. Nonparticipants were grouped by cluster analysis based on the reasons for nonparticipation.

Results: A total of 95% of participants and 36% of nonparticipants reported to have received a recommendation for diabetes education from their physician. The authors identified 4 typical subgroups of nonparticipants: the “informed and responsible,” the “unconcerned without desire for more information,” the “uninformed but responsible,” and the “anxious and burdened with psychosocial problems and functional limitations.”

Conclusions: The physician’s recommendation seems to influence participation in diabetes education and should be used intentionally to increase participation rates. Also, differentiating barriers of nonparticipants can be determined by the degree of feeling informed and responsible for diabetes management. Physicians should more clearly explore patients’ perception of their knowledge of diabetes and their attribution of responsibility for diabetes management. Starting from this patient perspective might help physicians motivate patients to participate in diabetes education.

Am J Manag Care. 2013;19(6):499-506A cluster analysis identified 4 subgroups of nonparticipants in type 2 diabetes mellitus education in order to improve recruitment strategies.

• The subgroups differed in respect to the perception of their knowledge of diabetes and their attribution of responsibility for diabetes management (to the physician or themselves).

• A strong association between the recommendation of the attending physician and participation in diabetes education was found.

• Starting from the patient’s perspective, physicians should explore the patient’s perceptions of the disease and its treatment more clearly as well as the patient’s personal goals and social context to motivate them to participate in diabetes education.

Diabetes self-management education is considered to be an effective intervention in patients with diabetes mellitus. It has been shown to lead to better glycemic control^1,2 and better psychosocial and health outcomes.³ Today, diabetes education is an important part of the national clinical practice guidelines4 and a compulsory element of the nationwide disease management program (DMP) for type 2 diabetes mellitus (T2DM) in Germany.⁵ Nonparticipation in diabetes education is not penalized. The success of diabetes education depends essentially on the willingness of the patients to participate.⁶ The researchers’ own previous work has shown that self-active and motivated patients with a lower risk of diabetic complications seem to be more likely to participate in the German DMP for T2DM. As a conclusion, patients with little self activity and motivation, who might have the greatest need for assistanceand the largest degree of room for improvement, may not be reached by the program.⁷ Analogously it is probable that a similar group of patients with little self activity and motivation, as well as deficits in diabetes knowledge and self-management fails to participate in diabetes education.

An evaluation from the federal state of North Rhine-Westphalia showed that 30% of DMP patients did not attend diabetes education—neither before nor after enrolment in the DMP.8 Other studies revealed a total participation rate in diabetes education in Germany of about 50%.^9,10 Research in other countries, eg, the United States, indicates similar findings.¹¹ Several studies have identified individual barriers for patients regarding diabetes education including time constraints, stress, transportation problems, functional limitations, no interest,¹² doubt of usefulness of the education program,¹³ feeling sufficiently informed,¹⁴ and anxious temperament.¹⁵ Until now there has been little research concerning the identification of patient subgroups for whom diabetes education could be tailored,¹⁶ as it is not possible to provide individual education on a large scale.

Therefore, the aim of this study was to analyze sociodemographic and illness-specific differences between participants and nonparticipants in diabetes education and to describe the reasons for nonparticipation. We intended to identify typical groups of nonparticipants in order to help improve recruitment strategies for diabetes education as well as adjust their contents to the needs of these groups.

METHODS

The study was designed as a cross-sectional, observational study comparing participants in diabetes education with nonparticipants. Patients with T2DM were randomly selected and recruited from 30 primary care practices located in and around 3 larger German cities (Hamburg, Bremen, and Berlin). In each practice we created a list of all patients with the International Classification of Diseases, Revision 10 (ICD-10) diagnosis E11 to E14 in the electronic patient charts of the general practitioner (GP). Patients with type 1 diabetes (as reported by the GP) and patients 80 years and older were excluded. From this list we randomly selected a maximum of 25 patients in each practice and contacted them for written informed consent to participate in the study. In total, 586 eligible patients received an informed consent form and the postal questionnaire. Nonresponders to the initial request received 2 additional invitations. In total, 297 patients (51%) agreed to participate and returned a completed questionnaire.

Data collection took place between April and November 2009. The study was carried out in accordance with the Code of Ethics of the Declaration of Helsinki and approved by the Ethics Committee of the Medical Association of Hamburg (reference number OB-024/07).

For data collection (see items in Table 1 and Figure 1) the researchers used a standardized postal patient survey and chart review. Chart review was used to assess age, gender, the duration of diabetes, the treatment of diabetes with oral medication or insulin, glycated hemoglobin (A1C) values, systolic blood pressure (BP) values, and body mass index (BMI) of the patients. The patient survey consisted of other items including 3 standardized measures: (1) the PHQ-2,¹⁷ a depression screening with 2 items concerning feelings of loneliness and loss of interest rated on a 4 point Likert scale; (2) a 7-item version of F-SOZU,¹⁸ an instrument for assessment of perceived and anticipated social support rated on a 5-point Likert scale; and (3) education classified by the international CASMIN standard¹⁹ in 3 groups: a) inadequately completed general education, general elementary education, or basic vocational qualification, b) intermediate qualification or general maturity certificate, and c) lower or higher tertiary education. The authors also included a self-developed standardized instrument with reasons for nonparticipation in diabetes education courses (12 items with dichotomous response options; see Figure 1) based onexisting evidence regarding barriers to attending diabetes education.^12-15

Nonparticipants in diabetes education were grouped by cluster analysis based on their reasons for not participating by the clustering algorithm “partitioning around medoids.”²⁰ The researchers chose the cluster solution between 2 and 5 clusters that had the maximum mean similarity within the clusters as measured by the maximum average silhouette width. The Jaccard coefficient was chosen as similarity coefficient,²¹ since it is suitable for asymmetric binary variables. Missing values regarding reasons for nonparticipation in diabetes education were imputed before analysis. Seven nonparticipants with more than 50% missing values were excluded, leaving a total of 125 nonparticipants for cluster analysis.

Bivariate tests of significance (2-sided t test and χ² test) were performed for assessment of differences between 1) participants and nonparticipants in diabetes education, and 2) clusters of nonparticipants. These analyses consisted of about 150 statistical tests. To minimize the number of false positive results an α-level of 0.1% (P <.001) was defined as statistically significant. Cluster analysis was performed with S-PLUS 8.1; all other statistical tests were conducted with Stata 11.0.

RESULTS

The comparison of participants and nonparticipants in diabetes education is based on 165 participants and 132 nonparticipants. Participants were treated with insulin more often than nonparticipants (31.1% vs 12.2%) and a much greater proportion of participants had received a recommendation for diabetes education from their attending physician (95.1% vs 35.5%) compared with nonparticipants. No differences between participants and nonparticipants were found regarding age, gender, duration of diabetes, A1C, BP, BMI, proportion of patients treated with oral medication, depressive symptoms, social support, education, or income (see Table 1).

More than half of the nonparticipants in diabetes education indicated that they did not attend diabetes education courses because they considered their knowledge regarding diabetes to be sufficient. Another 29% stated that they did not participate because they felt their attending physician was responsible for diabetes management, not they themselves, while 21% stated that they did not understand the purpose of diabetes education. Other reasons included negative feelings regarding education courses (21%) or groups of people (20%) and fear of excessive demands of diabetes education, eg, that the content would be too difficult to understand (13%). Finally, nonparticipants also complained about a great regional distance to the training center (21%), physical demands of diabetes education (19%), and problems with vision or hearing (10%), as well as time constraints in connection with their occupation (15%), or family (10%) and financial contributions, eg, travel expenses (12%). The reasons for nonparticipation are shown in Figure 1.

Cluster analysis was performed on 125 nonparticipants in diabetes education. The average silhouette width was at its maximum 0.36 in a 4-cluster solution (see Figure 2). Descriptive data for the 4 clusters can be found in Table 2, and statistical significance of differences between the clusters is shownin the eAppendix (available at www.ajmc.com). There were no differences between the clusters in sociodemographic or illness-specific data. The 4 clusters differed most in the 2 most frequently given reasons for nonparticipation. Patients in cluster1 completely agreed with “Knowledge of diabetes is considered sufficient” and completely disagreed with “Physician is responsible for diabetes management.” In contrast, patients in cluster 3 completely disagreed with both statements. Patients in clusters 2 and 4 largely agreed with both statements (73% and 100% or cluster 2 and 83% and 85% for cluster 4). Cluster 4 is distinct from the 3 other clusters due to the significantlyhigher rate of agreement with “Intended purpose of diabetes education is unclear” (79%), “Negative feelings regarding education courses” (85%) and “groups of people” (77%), and “Fear of excessive demands of diabetes education, eg, difficult contents” (67%). There is also a higher rate of patients with “Problems with vision or hearing” (57%) than in clusters 1 or 3. Patients in cluster 4 have the highest agreement rate (they agree with 8.3 of the reasons on average) and patients in cluster 3 have the lowest rate (0.7 reasons on average). The difference between patients from cluster 1 (2.2 reasons) and cluster 2 (2.7 reasons) is not statistically significant.

DISCUSSION

As a first step the authors compared participants with nonparticipants in diabetes education, yielding a strong association between the recommendation of the attending physician and participation in diabetes education, which has been reported before.¹² The correlation between physician recommendation and patients’ attendance in diabetes education might mean that the attending physician (who is the GP in most cases) strongly influences the patient’s decision. If this association can be confirmed, participation rates in diabetes education could be increased if physicians recommended it to more patients^.22 However, the information on the recommendation of the attending physician is based on patients’ self reports. It could be that patients who have not participated in an education course did not remember such a recommendation. It should be assessed in future research whether this finding can be confirmed in physician interviews and/or chart reviews.

Among participants, there is a greater proportion of patients who are treated with insulin than among nonparticipants. This may be explained by the fact that insulin therapy is more invasive than oral medication or lifestyle modification, and that diabetes education is more important for everyday self-management if patients are insulin dependent. From other research it is also known that many patients with T2DM underestimate the disease as long as they do not need to inject insulin.²³ This may impact on education adherence as well. However, two-thirds of the patients attending diabetes education were not insulin dependent.

No further differences between participants and nonparticipants in other illness-specific or sociodemographic variables could be found. This is in contrast to evidence from other countries that age,²⁴ gender,¹² or poor language skills²⁵ influence participation in diabetes education. The lack of such differences in the present study may be explained by the fact that the authors only included DMP participants, which may have homogenized the population. The rationale for this inclusion criterion was that diabetes education was funded only for DMP participants within the statutory health insurance scheme during the time period under study.

Among nonparticipants, the most important reason for not attending diabetes education was that their knowledge of diabetes was considered sufficient. There was also a rather high percentage of persons who felt that diabetes management was not their own responsibility and relied on the activity of their attending physician. Only a maximum of one-fifth of the total population of nonparticipants agreed with each of the other statements. This might indicate that beyond knowledge and the attribution of responsibility, other reasons for nonparticipation are quite individual. Four typical subgroups of nonparticipants emerged from cluster analysis:

• All patients from cluster 1, the “informed and responsible,” considered their knowledge of diabetes sufficient and they all felt responsible for diabetes management. Nonparticipation in diabetes education may be a rational decision for these patients; they may be a group of patients who are sufficiently informed from sources other than diabetes education, eg, family, friends,¹³ media, or their attending physician. Further research is needed to clarify whether this patient group really is so well informed that they wouldn’t benefit from diabetes education—at least as long as their diabetes does not worsen.
• The largest part of patients in cluster 2, the “unconcerned without desire for more information,” also feels sufficiently informed, but firmly believes that they are not responsible for their own diabetes management. It might be that patients from this cluster do not take diabetes seriously enough, because of low severity, for instance, or because they deny presence of the illness.^12,26 Feeling sufficiently informed has been shown to be a major barrier to diabetes education, but it does not necessarily imply that the patients in fact have enough information. Therefore it may also be that they do not understand the importance of their contribution to diabetes treatment,¹⁴ because their attending physician does not provide enough information, for example, or because he does not sufficiently involve the patients in diabetes treatment.²⁷ For this reason patients from cluster 2 might benefit from improvements in physician communication questioning the assignment of diabetes management to the physician.
• Cluster 4, the “anxious and burdened,” is very similar to cluster 2 regarding subjective knowledge andresponsibility, but for a large portion of these patients many other reasons are also relevant for nonparticipation. These especially include psychosocial problems (as indicated by negative feelings regarding groups of people or education courses) and functional limitations (especially problems with vision or hearing). Itmay be that this comorbidity dominates their treatment decisions. Psychological problems in particular might account for a shortfall in regimen adherence.²⁸ Patients with highly anxious temperament might profit from anxiety-reducing interventions in diabetes education.¹⁵ Additionally, it may be important to tailor programs for persons with functional limitations (eg, poor vision or hearing).²⁹ Many patients from cluster 4 also state that the intended purpose of diabetes education is unclear and that they fear excessive demands, such as difficult content. Attending physicians should therefore communicate the relevance of diabetes education for everyday life and, if applicable, the existence of programs specially tailored to these patients.¹²
• Patients from cluster 3, the “uninformed but responsible,” which is the largest cluster of the sample, completely stated that they did not feel sufficiently informed though they felt completely responsible for their diabetes management. Why these patients did not participate in diabetes education remains unclear. A qualitative study has shown that many patients attend diabetes education because they are experiencing practical problems and feeling uncertain about diabetes management due to insufficient information.30 Patients from cluster 3 mentioned only a very few reasons for nonparticipation, and 49% of these patients did not agree with any of the predefined statements. In the authors’ view patients from cluster 3 may be the most accessible target group for diabetes education, but there seem to be barriers to attending diabetes education that remain unmeasured in the present study.

It is notable that, except for cluster 4, most of the suggested reasons beyond the sufficient knowledge and the attribution of responsibility to the physician were marked only to a small degree as being relevant. It is possible that these reasons really didn’t fit, but it could also be that patients have difficulty in either understanding their specific reasons or in admitting that these mostly negatively attributed reasons play a role.

In consequence it is important that the attending physician assesses the barriers of diabetes education individually during a consultation. The patients’ individual perceptions of knowledge of diabetes and sense of responsibility for diabetes management might be a good starting point for enhancing the communication on barriers to diabetes education.

Strengths and Weaknesses of the Study

This study used cluster analysis for identifying differences in barriers to attending diabetes education between patient subgroups. The cluster analyses performed well on the givendata set; ie, the clusters are clearly separated by a subset of variables with high statistical significance (P <.001), and the analyses have a good model fit expressed by a silhouette width of 0.36.

Another strength is the use of pooled data analysis with data from a postal patient survey (which include the patient’s perspective) and data from chart reviews (which represent more objective illness-specific data). The participants in this study were not selected by the GP or patients’ healthcare utilization patterns, since a chart registry approach rather than a waiting room recruitment strategy was used. The researchers avoided errors in data input by including multiple plausibility checks for each variable during and after data entry. Interviewers for data collection of A1C, BP, and BMI at GP practices were trained and monitored, and the questionnaire for the postal survey was piloted on 84 patients from 6 GP practices. Each patient received up to 3 invitations to participate in this study, and a response rate of 51% was obtained.

A weakness of this approach is that the analyses are based on 165 participants and 132 nonparticipants in diabetes education,which seems to be a rather low sample size. This problem becomes even more prominent when one considers thatthe authors had to conduct multiple statistical tests, which led to the requirement of a very strict significance level of P <.001 in order to minimize the possibility of false positive results. Because of the low sample size and the strict significance level, some differences between clusters (especially regarding sociodemographic and illness-specific data) may have been missed. Irrespective of this problem, large differences in patient subgroups regarding personal reasons for nonparticipation in diabetes education were identified. Further research will need to show whether the hypotheses generated from these explorative analyses can be confirmed in larger populations.

Practice Implications

There was a strong association between the recommendation of the attending physician and participation in diabetes education. For this reason the recommendation can be used intentionally to increase participation rates. Physicians should explore the patients’ perceptions of the disease and its treatment more clearly, as well as the patients’ personal goals and social context. Starting from this patient perspective might help the physicians in motivating patients to participate in diabetes education.

Among nonparticipants the authors found 4 typical subgroups: the “informed and responsible,” the “unconcerned without desire for more information,” the “uninformed but responsible,” and the “anxious and burdened.” It seems to be important that the attending physician assesses the barriers to diabetes education individually during a consultation. As the 4 groups mainly differed regarding the perception of their knowledge of diabetes and their attribution of responsibility for diabetes management (to the physician or to themselves) it might be helpful to address these 2 aspects first in the consultation in order to discuss and eventually overcome the barriers to attending diabetes education.Author Affiliations: From Department of Primary Medical Care (IS, CK, MP, HVDB, HK), University Medical Center Hamburg-Eppendorf, Hamburg, Germany; Institute for Biometry (BW), Hannover Medical School, Hanover, Germany.

Funding Source: This study was funded by the German Federal Ministry of Education and Research (grant number 01GK0714) and the German Medical Association within their peer-reviewed Funding Initiative for Health Services Research (grant number 06-152). The funding bodies had no influence on study design, on the collection, analysis, or interpretation of data, on the writing of the manuscript, or on the decision to submit the manuscript for publication.

Author Disclosures: The authors (IS, CK, BW, MP, HK) report no relationship or financial interest with any entity that would pose a conflict of interest with the subject matter of this article.

Authorship Information: Concept and design (CK, BW, HK); acquisition of data (CK, HK); analysis and interpretation of data (IS, BW, HK); drafting of the manuscript (IS, MP, HK); critical revision of the manuscript for important intellectual content (MP, HVDB, HK); statistical analysis (IS, BW); obtaining funding (CK, HVDB, HK); administrative, technical, or logistic support (MP, HVDB, HK); and supervision (HK).

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