Diabetes Research Matters: A Three-Round Priority-Setting Survey Consultation with Adults Living with Diabetes and Family Members in Australia.

OBJECTIVE: We aimed to identify the health and quality-of-life research priorities of Australians with diabetes or family members. METHODS: Through an iterative, three-step, online survey process we (1) qualitatively generated research topics (long list) in response to one question "What research is needed to support people with diabetes to live a better life?"; (2) determined the most important research questions (short list); and (3) ranked research questions in order of importance (priorities). We aimed to recruit N = 800 participants, with approximate equal representation of diabetes type and family members. RESULTS: Participants (N = 661) were adults (aged 18+ years) in Australia with a self-reporting diagnosis of diabetes (type 1, n = 302; type 2, n = 204; prior/current gestational, n = 58; less common types, n = 22, or a family member, n = 75). Retention rates for Surveys 2 and 3 were 47% (n = 295) and 50% (n = 316), respectively. From 1549 open-text responses, 25 topics and 125 research questions were identified thematically. Research priorities differed by cohort, resulting in specific lists developed and ranked by each cohort. The top-ranked research question for the type 1 diabetes cohort was "How can diabetes technology be improved …?" and for the type 2 diabetes cohort: "How can insulin resistance be reversed …?". One question was common to the final lists of all cohorts: "What are the causes or triggers of diabetes?" Within cohorts, the top priorities were perceived as being of similar importance. CONCLUSIONS: The research priorities differ substantially by diabetes type and for family members. These findings should inform funding bodies and researchers, to align future research and its communication with community needs.

The diabetes management experiences questionnaire: Psychometric validation among adults with type 1 diabetes.

AIMS: To examine the psychometric properties of the Diabetes Management Experiences Questionnaire (DME-Q). Adapted from the validated Glucose Monitoring Experiences Questionnaire, the DME-Q captures satisfaction with diabetes management irrespective of treatment modalities. METHODS: The DME-Q was completed by adults with type 1 diabetes as part of a randomized controlled trial comparing hybrid closed loop (HCL) to standard therapy. Most psychometric properties were examined with pre-randomization data (n = 149); responsiveness was examined using baseline and 26-week follow-up data (n = 120). RESULTS: Pre-randomization, participants' mean age was 44 ± 12 years, 52% were women. HbA1c was 61 ± 11 mmol/mol (7.8 ± 1.0%), diabetes duration was 24 ± 12 years and 47% used an insulin pump prior to the trial. A forced three-factor analysis revealed three expected domains, that is, 'Convenience', 'Effectiveness' and 'Intrusiveness', and a forced one-factor solution was also satisfactory. Internal consistency reliability was strong for the three subscales ( α range = 0.74-0.84) and 'Total satisfaction' ( α = 0.85). Convergent validity was demonstrated with moderate correlations between DME-Q 'Total satisfaction' and diabetes distress (PAID: rs = -0.57) and treatment satisfaction (DTSQ; rs = 0.58). Divergent validity was demonstrated with a weak correlation with prospective/retrospective memory (PRMQ: rs = -0.16 and - 0.13 respectively). Responsiveness was demonstrated, as participants randomized to HCL had higher 'Effectiveness' and 'Total satisfaction' scores than those randomized to standard therapy. CONCLUSIONS: The 22-item DME-Q is a brief, acceptable, reliable measure with satisfactory structural and construct validity, which is responsive to intervention. The DME-Q is likely to be useful for evaluation of new pharmaceutical agents and technologies in research and clinical settings.

Feasibility and acceptability of e-learning to upskill diabetes educators in supporting people experiencing diabetes distress: a pilot randomised controlled trial.

BACKGROUND: Diabetes distress is a commonly experienced negative emotional response to the ongoing burden of diabetes. Holistic diabetes care, including attention to diabetes distress, is recommended in clinical guidelines, yet not routinely implemented. Diabetes health professionals have highlighted lack of training as a barrier to implementation of psychological care. Therefore, we developed an e-learning: 'Diabetes distress e-learning: A course for diabetes educators' to address this need. This pilot study aimed to examine the feasibility of evaluating the e-learning in a randomised controlled trial study, the acceptability of the e-learning to credentialled diabetes educators (CDEs); and preliminary evidence of its effect upon CDEs' diabetes distress-related knowledge, motivation, confidence, behavioural skills, and barriers to implementation. METHODS: A pilot, unblinded, 2-armed, parallel group randomised controlled trial. Participants were recruited during a 4-month timeframe. Eligible participants were CDEs for ≥ 1 year providing care to ≥ 10 adults with type 1 or type 2 diabetes per week. Participants were randomly allocated (1:1 computer automated) to 1 of 2 learning activities: diabetes distress e-learning (intervention) or diabetes distress chapter (active control). They had 4 weeks to access the activity. They completed online surveys at baseline, 2-week and 12-week follow-up. RESULTS: Seventy-four eligible CDEs (36 intervention, 38 active control) participated. At baseline, recognition of the clinical importance of diabetes distress was high but knowledge and confidence to provide support were low-to-moderate. Engagement with learning activities was high (intervention: 83%; active control: 92%). Fifty-five percent returned at least 1 follow-up survey. All 30 intervention participants who returned the 2-week follow-up survey deemed the e-learning high quality and relevant. Systemic barriers (e.g., financial limitations and access to mental health professionals) to supporting people with diabetes distress were common at baseline and follow-up.  CONCLUSIONS: The e-learning was acceptable to CDEs. The study design was feasible but needs modification to improve follow-up survey return. The e-learning showed potential for improving diabetes distress-related knowledge, confidence and asking behaviours, but systemic barriers to implementation remained. Systemic barriers need to be addressed to facilitate implementation of support for diabetes distress in clinical practice. Future larger-scale evaluation of the e-learning is warranted.

Developing a novel diabetes distress e-learning program for diabetes educators: an intervention mapping approach.

Diabetes distress is a common negative emotional response to the ongoing burden of living with diabetes. Elevated diabetes distress is associated with impaired diabetes self-management and quality of life yet rarely identified and addressed in clinical practice. Health professionals report numerous barriers to the provision of care for diabetes distress, including lack of skills and confidence, but few diabetes distress training opportunities exist. The purpose of this paper is to describe how we utilized Intervention Mapping to plan the development, implementation, and evaluation of a novel diabetes distress e-learning program for diabetes educators, to meet a well-documented need and significant gap in diabetes care. A multidisciplinary team (combining expertise in research, health and clinical psychology, diabetes education, nursing, tertiary education, and website architecture) developed a diabetes distress e-learning program. We followed a six-step process (logic model of the problem, program outcomes and objectives, program design, program production, program implementation plan, and evaluation plan) known as Intervention Mapping. The program is underpinned by educational and psychological theory, including Bloom's Taxonomy of Educational Objectives and social cognitive theory. We developed a short (estimated 4 h) e-learning program for diabetes educators, which draws on the content of the Diabetes and Emotional Health handbook and toolkit. It integrates a 7As model, which provides a stepwise approach to identifying and addressing diabetes distress. Our diabetes distress e-learning program has been developed systematically, guided by an Intervention Mapping approach. In the next phase of the project, we will trial the e-learning.

Adults With Diabetes Distress Often Want to Talk With Their Health Professionals About It: Findings From an Audit of 4 Australian Specialist Diabetes Clinics.

OBJECTIVES: In an unselected clinical sample, we aimed to: 1) investigate the willingness of adults with diabetes to talk with their health professional(s) about their feelings and experiences living with diabetes, 2) assess the prevalence of impaired general emotional well-being and severe diabetes distress and 3) examine whether willingness to talk related to general and/or diabetes-specific emotional well-being. METHODS: Unselected adults with type 1 diabetes (T1D) or type 2 diabetes (T2D) attending 4 Australian specialist diabetes clinics completed surveys about their experiences of, and preferences for, talking with their diabetes health professional(s) about their feelings and personal experiences of diabetes. They indicated preferred topics to discuss from a list and completed validated measures of emotional well-being (World Health Organisation-5 Well-being Index) and diabetes distress (Problem Areas In Diabetes scale). RESULTS: Among 682 participants (T1D, n=440; T2D, n=142), one-fourth of adults with T1D and nearly half with T2D wanted to talk with their health professional about their "feelings and personal experience of living with diabetes," with >50% reported having been asked. The most commonly selected topic was "How diabetes affects my mood" (T1D, 35%; T2D, 37%). Impaired emotional well-being (T1D, 33%; T2D, 39%) and severe diabetes distress (T1D, 17%; T2D, 25%) were prevalent. Those willing to talk had greater diabetes distress. CONCLUSIONS: In this study we show that many adults with T1D and T2D both need and want to talk to their diabetes health professionals about the emotional impact of diabetes. Those who were most willing to have this conversation were most in need of emotional support.