Participants were 15 young adults with Type 1 diabetes (93% female, 92% white; see ). Mean age was 26 ± 3.3 years, diabetes duration was 10.6 ± 8.0 years (range 1–22 years) and 40% were currently treated with an insulin pump. Mean self-reported HbA1c was 55 ± 14 mmol/mol (7.2 ± 1.3%), while mean laboratory HbA1c prior to the group start was 59 ± 16 mmol/mol (7.6 ± 1.4%) (r = 0.99, P < 0.0001). Participants were highly educated (> 85% obtained a bachelor's degree or higher), 80% were single and 93% had no children. The majority were seen in an adult diabetes clinic (75%), with the remainder treated by paediatric providers. The majority (86%) had never before participated in any diabetes support group or community-based programme.
Participant characteristics (n = 15)
Diabetes burden and self-care
Participants completed the Problem Areas in Diabetes survey and the Self-Care Inventory-R to measure burden related to diabetes and diabetes self-care, prior to the group and at the last group session (). Scores on the Problem Areas in Diabetes survey decreased significantly from pre- to post-group (pre: 55.5 ± 15.6; post: 38.5 ± 19.2; P = 0.02), indicating that participants endorsed less diabetes-related burden after group participation. Scores on the Self-Care Inventory increased from pre- to post-group (pre: 63.6 ± 12.3; post: 72.0 ± 13.7; P = 0.09), indicating that participants increased their self care behaviours, with a trend towards significance.
FIGURE 1 Problem Areas in Diabetes () and Self-Care Inventory () results.
Glycaemic control and utilization of care pre- and post-group
After excluding two participants who did not have documented HbA1c values in the electronic health record in the year prior to the group and one who did not have a value in the year after the first group session, pre- and post-group HbA1c data were available for 12 participants. Mean HbA1c was 63 ± 15 mmol/mol (7.9 ± 1.4%) during the year prior to the group and 60 ± 12 mmol/mol (7.6 ± 1.1%) in the year after the group (P = 0.10), with 2/3 of participants demonstrating improvement.
Data regarding frequency of visits at Joslin in the year prior to and the year after the first group session included encounters with doctors, nurse practitioners, registered nurses/certified diabetes educators, dieticians, exercise physiologists and mental health providers. Mean and median numbers of visits were approximately the same pre- and post-group (pre: 8.6 ± 7.2 and 7; post: 7.9 ± 5.6 and 8, respectively). The number of visits between participants varied greatly (0–27 pre; 2–27 post; some participants were not Joslin patients). There was no relationship between change in HbA1c and change in visit frequency (pre- to post-group).
Topics important to group participants
Following a request for discussion topics for group sessions, participants identified three unique themes: (1) objective approaches to managing diabetes in day-to-day life; (2) subjective recollections of interactions with peers without diabetes and others regarding diabetes; (3) emotions related to insecurities, concerns about imperfections in care, stress, anxiety and sadness. Attending to diabetes in day-to-day life was a popular topic, which included how to incorporate diabetes management tasks in the workplace and/or at school, explaining challenges related to diabetes to others who are unaware of the disease and its needs, and handling unexpected factors related to diabetes management, such as delayed mealtimes. Next, participants wanted to discuss experiences others have had related to diabetes and were particularly interested in hearing about `how other people aren't perfect'. Third, discussions around emotional issues included stress caused by frequent diabetes management tasks and anxiety related to imperfections in diabetes management, along with fear of complications.
Most participants, on the one hand, noted relative ease with which to take insulin and to comprehend the diabetes management programme, including attention to diet and healthful eating. On the other hand, most participants endorsed challenges with the unremitting demands of constant diabetes management, stresses related to coping with others with regard to diabetes care and general anxiety regarding diabetes during young adulthood.
Preferences for diabetes care
We asked these young adults about their preferences for diabetes care and reasons for changing diabetes treatment teams, if applicable. Participants sought diabetes care providers who were knowledgeable, supportive and responsive, and worked within a multidisciplinary team. Participants reported a need for improved communication with providers, and those who had changed treatment teams reported discomfort with their providers attributable to a number of factors, including inadequate knowledge and insufficient interaction time. Many participants noted that provider communication could be improved, although three participants reported they would not change anything about their care.