Flexible inclusion of dialogue about psychosocial aspects of life with type 1 diabetes in routine consultations: A study of a questionnaire-based dialogue tool to promote person-centred support.

AIMS: To explore (1) experiences among people with type 1 diabetes and diabetologists of using a questionnaire-based dialogue tool in routine consultations to identify and address psychosocial challenges and (2) experiences of person-centredness in this group compared with a group who did not use the tool. METHODS: In all, 42 people with type 1 diabetes (mean age 54 years, mean diabetes duration 31 years and 60% women) were interviewed and completed an evaluation questionnaire following a routine consultation with the use of a dialogue tool including PAID-5, WHO-5 and open-ended questions. A comparison group of 42 people with type 1 diabetes attending routine consultations without the use of dialogue tools completed evaluation questionnaires. All consultations were audio recorded. Diabetologists were interviewed after completing all test consultations. Interviews were analysed using thematic text condensation. Evaluation questionnaires were analysed using descriptive statistics, chi square tests and Student's two-sided t-tests. RESULTS: Most participants found questions in the dialogue tool relevant to discuss with the diabetologist, and two-thirds were satisfied with the time spent on that. Experiences of people with type 1 diabetes and diabetologists were related to three pathways: (1) the tool supported valuable conversations with the diabetologist, (2) conversations with the diabetologist were unchanged and (3) the tool derailed conversations. All participants reported high levels of person centredness; however, significantly more in the comparison group reported that the diabetologist made them feel at ease (80 vs. 55%) and discussed and planned specific changes with them (93 vs. 67%). CONCLUSION: A questionnaire-based dialogue tool in consultations can support the discussion of psychosocial issues of people with type 1 diabetes. However, flexible and tailored use of the dialogue tool is crucial as consultations may otherwise be derailed.

What people with diabetes in Denmark worry about during the COVID-19 pandemic: A longitudinal study of the first 3 months of the COVID-19 pandemic.

To investigate and characterise general and diabetes-specific worries related to COVID-19 among people with diabetes in Denmark during the first 3 months of the pandemic. In a longitudinal study from March to June 2020, six online questionnaires (Q1-Q6) were distributed to 2430 adult members of two diabetes panels. Worries related to COVID-19 were measured with closed- and open-ended items. Data from closed-ended items were analysed descriptively. Open-ended responses were analysed with systematic text condensation. Using chi-squared tests, changes in proportions of worries over time were analysed, and differences in diabetes-specific worries by gender and diabetes diagnosis were explored. At Q1, 1366 individuals returned a response (Q2: 1082, Q3: 992, Q4: 977, Q5: 901, Q6: 816). In the beginning of the pandemic, 2 weeks after the first lockdown in Denmark, the most frequently reported general worries related to someone close becoming seriously ill, changes in daily life such as limitations on social interactions and uncertainty about the duration of those changes. The most frequently reported diabetes-specific worries were about severity of illness with COVID-19 due to diabetes, being identified as a member of a group at risk for COVID-19 and being unable to manage diabetes if ill with COVID-19. All concerns decreased over 3 months, as the society gradually reopened, except for persistent worries about being able to manage diabetes if ill with COVID-19. More women and people with type 1 diabetes reported worries, compared with men and people with type 2 diabetes. Our study highlights the diversity of worries related to the COVID-19 pandemic among people with diabetes and changing patterns of worry over time and across subgroups as the society reopened in Denmark. These insights can be helpful when providing support for people with diabetes during health crises.

Playing With Peers: Exploring Peer Support Mechanisms of a Type 2 Diabetes-Specific Board Game.

In this study, we explored specific mechanisms of a board game developed to facilitate peer support among people with Type 2 diabetes attending group-based diabetes education. The game was tested with 76 people with Type 2 diabetes who participated in focus groups after the game. Data from observations of audio-recorded games and focus groups were analyzed using Interpretive Description. Six mechanisms facilitating peer support among people with Type 2 diabetes were identified: (a) entering a safe space of normality created by emotional in-game mirroring; (b) mutual in-game acknowledgment of out-of-game efforts; (c) forming relationships through in-game humor; (d) health care professionals using game rules to support group dialogues of interest to people with Type 2 diabetes; (e) being inspired by in-game exchange of tips and tricks; and (f) co-players guiding each other during the game. Peer support was inhibited by the mechanism of game rules obstructing group dialogues.

Which self-reported measures are useful to explore diabetes support needs among adults with diabetes and severe mental illness?

OBJECTIVES: To construct and test patient-reported outcome measures (PROMs) for identifying diabetes support needs of adults with co-existing diabetes and severe mental illness (SMI) provided by mental health professionals at psychiatric outpatient clinics. METHODS: Design thinking was used to identify, select, and modify PROMs in collaboration with 18 adults with type 1 or type 2 diabetes and SMI and 10 healthcare experts. The PROMs were then tested with 86 adults with diabetes and SMI recruited from eight psychiatric outpatient clinics in Denmark. Data were analysed using systematic text condensation (questionnaire construction) and descriptive statistics (testing). RESULTS: Four principles for PROMs were identified: (a) be modified to be relevant for the target group, (b) be concise and simple to complete, (c) have a clear and unambiguous wording, and (d) be designed to measure topics that are perceived as meaningful. Test of the questionnaire contained 49 items in four domains. Missing response rates in the test were 1.2-4.7% in three domains and 4.7-11.6% in a domain addressing potential sources of diabetes support. DISCUSSION: PROMs can successfully be constructed in collaboration with this vulnerable population that yield low rates of missing responses.

Associations between use of diabetes technology and diabetes distress: a Danish cross-sectional survey of adults with type 1 diabetes.

INTRODUCTION: The study aimed to investigate independent and combined associations between insulin delivery method (insulin pump therapy (IPT) vs multiple daily injections (MDI)), glucose monitoring method (intermittently scanned continuous glucose monitoring (isCGM) and real-time continuous glucose monitoring (rtCGM) vs blood glucose metre (BGM)) and diabetes distress (DD) in adults with type 1 diabetes (T1D). RESEARCH DESIGN AND METHODS: We combined data from two Danish questionnaire-based surveys, the Steno Tech Survey (n=1591) and the Type 1 Diabetes Distress Scale (T1-DDS) validation survey (n=4205), in which individuals aged ≥18 years with T1D were invited to participate. The 28-item T1-DDS was used to measure DD and DD scores were categorised as little or no distress (score <2.0), moderate distress (2.0-2.9) and high distress (score ≥3.0). Associations between insulin delivery, glucose monitoring methods and DD were assessed using linear regression. RESULTS: Among 2068 adults with T1D who responded to one of the surveys, the use of IPT was associated with a lower total T1-DDS score (-0.09, 95% CI 0.16 to -0.03) compared with MDI and adjusted for glucose monitoring method. The use of CGM was associated with a higher total T1-DDS score (0.11, 95% CI 0.05 to 0.18) compared with BGM and adjusted for the insulin delivery method. IPT was still associated with a lower T1-DDS score, regardless of being combined with BGM (-0.17, 95% CI -0.28 to -0.06) or CGM (-0.13, 95% CI -0.21 to -0.05), compared with MDI with CGM. No association was found between the type of CGM (isCGM vs rtCGM) and DD among either IPT or MDI users when restricting analysis to individuals using CGM. CONCLUSIONS: Among Danish adults with T1D, the use of IPT was associated with lower levels of DD, while CGM use was associated with higher levels of DD. DD should be addressed when introducing people with T1D to diabetes technology, CGM in particular. TRIAL REGISTRATION NUMBER: NCT04311164 (Results).

Schizophrenia and type 2 diabetes: Perceptions and understandings of illness management in everyday life.

People with schizophrenia and type 2 diabetes face complex challenges in daily life and the management of both illnesses is burdensome. This qualitative interview study aimed to explore perceptions and understandings of the day-to-day management of schizophrenia and type 2 diabetes. Fourteen semi-structured interviews were conducted between January 2020 and October 2021 in the participants' respective mental health clinics, in their homes or by phone. Thematic analysis led to four themes representing participants' self-management strategies and perceived challenges. The first theme showed that participants use self-learned strategies for managing schizophrenia. In contrast, they perceived type 2 diabetes self-management as governed by a set of rules and guidelines given by health professionals. The second theme showed that both psychotic and negative symptoms present challenges to diabetes management. Theme 3 illustrated that participants consider their type 2 diabetes to be a very serious illness. They worried about potential long-term consequences and expressed wishes and motivation to improve their lifestyle. The final theme showed that participants discuss challenges related to their schizophrenia with family and friends but not type 2 diabetes. In conclusion, this study highlights the importance of considering individual challenges and everyday routines when supporting this population. It underlines the need for future research to further explore the complexity of managing the illnesses and to understand the needs for treatment and support.

A Short-Form Measure of Diabetes Distress Among Adults With Type 1 Diabetes for Use in Clinical Practice: Development and Validation of the T1-DDS-7.

OBJECTIVE: Valid and reliable diabetes distress assessment is essential for identifying adults with elevated levels of concern and to guide targeted support. However, assessing diabetes distress must also be feasible in time-limited settings. We aimed to identify a short-form measure of the 28-item Type 1 Diabetes Distress Scale (T1-DDS-28) representing seven sources of type 1 diabetes distress that would be convenient for use in clinical practice. RESEARCH DESIGN AND METHODS: Based on the evaluation of influence and importance by 14 experts in diabetes care and research, we identified the best-performing item within each of seven sources of diabetes distress included in the T1-DDS-28. To further validate the proposed short-form measure, we used survey data from 2,016 adults living with type 1 diabetes. Validity was examined by exploratory factor analysis, Cronbach's α, test-retest reliability analysis, and correlations with other psychosocial measures. RESULTS: We identified a short-form measure of the T1-DDS-28 consisting of seven items, each representing a source of diabetes distress. These items showed satisfactory reliability (factor loadings > 0.45; α = 0.82; test-retest correlation, r = 0.90) and validity (correlation with T1-DDS-28, r = 0.95; area under the curve = 0.91; sensitivity 93%; specificity 89%) when combined in the short-form scale (T1-DDS-7). CONCLUSIONS: We propose the T1-DDS-7 as a valid and reliable measure for routine screening of diabetes distress among adults with type 1 diabetes. In case of elevated levels of diabetes distress, we recommend that a full-scale assessment and open dialogue follow the short-form measure before determining further treatment.

The role of self-efficacy, well-being capability and diabetes care assessment for emotional and diabetes management challenges during the COVID-19 pandemic: Findings from a follow-up study.

This study aimed to investigate the potential protective role of baseline resources and capabilities for experiencing challenges to emotional well-being and perceived access to and quality of diabetes care during the COVID-19 pandemic in a Danish type 2 diabetes population (N = 1608). We investigated how differences in self-efficacy, well-being capability, socioeconomic status, health status, and perceptions of diabetes care measured before the COVID-19 pandemic were related to experiences of well-being and diabetes management challenges during the pandemic. The study is based on a survey conducted shortly before the pandemic (autumn 2019) and a follow-up survey during the pandemic (autumn 2020), which included questions about impacts of the pandemic. We used this longitudinal data to quantitatively investigate in regression analyses how self-reported baseline indicators of chronic care access and quality (PACIC), self-efficacy (GSE), health (EQ VAS), and well-being capability (ICECAP-A), and registry-based socioeconomic indicators were associated with the probability of reporting negative impacts on emotional wellbeing and diabetes management. Results showed that respondents with higher baseline general self-efficacy and higher well-being capability scores, who more often considered care well-organised and were in better health before the pandemic, were less likely to report pandemic-related negative impacts on emotional well-being. Considering diabetes care well organised before the pandemic was associated with a lower probability of adverse impacts on diabetes care. The results thus broadly confirmed that several indicators of higher levels of baseline resources and capabilities were associated with a lower probability of reporting negative impacts of the pandemic. However, some variation in predictors was observed for general well-being outcomes, compared to diabetes-care specific challenges, and findings on socioeconomic status as indicated by education were mixed.

How has the COVID-19 Pandemic Affected Diabetes Self-Management in People With Diabetes? - A One-Year Follow-Up Study.

Background and Aim: In Denmark, the COVID-19 pandemic resulted in two lockdowns, one from March to May 2020 and another from December 2020 to April 2021, which had severe impact on everyday life. The aim of this study was to explore changes in diabetes self-management behaviors during the pandemic and to examine how specific population characteristics were associated with changes in diabetes management. Methods and Participants: In a cohort study from March 2020 to April 2021, two online questionnaires were collected from a total of 760 people with diabetes. Descriptive statistics were used to assess the proportion of participants experiencing improvements, deterioration, and status quo in diabetes self-management during the pandemic. Using logistic regressions, baseline characteristics were explored as potential predictors of change. Results: Approximately half of the participants reported that they experienced lower physical activity in April 2021 compared to before the pandemic, approximately one fifth reported diabetes self-management to be more difficult than prior to the pandemic, and one fifth reported eating more unhealthily than before the pandemic. Some participants reported higher frequency of high blood glucose levels (28%), low blood glucose levels (13%) and more frequent blood glucose variability (33%) compared to before. Easier diabetes self-management was reported by relatively few participants, however, 15% reported eating more healthily, and 20% reported being more physically active. We were largely unable to identify predictors of change in exercise activities. The few baseline characteristics identified as predictors of difficulties in diabetes self-management and adverse blood glucose levels due to the pandemic were sub-optimal psychological health, including high diabetes distress levels. Conclusion: Findings indicate that many people with diabetes changed diabetes self-management behaviors during the pandemic, mostly in a negative direction. Particularly high diabetes distress levels in the beginning of the pandemic was a predictor of both positive and negative change in diabetes self-management, indicating that people with high diabetes distress levels could potentially benefit from increased support in diabetes care during a period of crisis.

Need for improved diabetes support among people with psychiatric disorders and diabetes treated in psychiatric outpatient clinics: results from a Danish cross-sectional study.

INTRODUCTION: People with psychiatric disorders have increased risk of premature death partly due to diabetes. This study aims to explore the quality of diabetes care, diabetes management, diabetes support and well-being of people with psychiatric disorders and diabetes. RESEARCH DESIGN AND METHODS: A total of 107 participants aged ≥18 years with diabetes and psychiatric disorders treated at psychiatric outpatient clinics in Denmark were recruited from August 2018 to June 2019. This descriptive cross-sectional study includes data from medical records on quality of diabetes care (eg, level and annual examination of hemoglobin A1c (HbA1c)) and questionnaires on diabetes management (measured on items from the Summary of Diabetes Self-Care Activities Scale and diabetes distress based on Problem Areas in Diabetes Scale (PAID-5)), diabetes support (no, some or high support from eight potential support persons and experience of care actions measured on items from Patient Assessment of Chronic Illness Care) and well-being (WHO 5-Item Scale and self-rated general health). RESULTS: The mean age was 52 years, 56% were men, the mean body mass index was 31.9 kg/m2, the median HbA1c was 53 mmol/mol (7.0%) and the mean blood pressure was 131/83 mm Hg. The proportion with annual measurements of HbA1c was 93%, blood pressure 80%, cholesterol 93%, foot examination 77% and eye examination 75%. Fifty-one per cent had high diabetes distress (PAID-5 score ≥8). Diabetologists and general practitioners (39% and 37%) were the health professionals most frequently reported to provide high diabetes support. CONCLUSIONS: This study highlights a need for improved diabetes support in people with psychiatric disorders and diabetes. Although a high proportion received appropriate diabetes care, we found high levels of diabetes distress, moderate levels of optimal self-management behaviors, low well-being and low diabetes support from psychiatric health professionals, while one-third of the population found it relevant to receive diabetes support from psychiatric health professionals.

Psychosocial health in people with diabetes during the first three months of the COVID-19 pandemic in Denmark.

AIMS: To analyze trajectories of psychosocial health among people with diabetes during the first three months of lockdowns and reopenings of the COVID-19 pandemic in Denmark. METHODS: An online longitudinal survey of 2430 people with diabetes consisting of six questionnaire waves (Q1-Q6) was conducted between March 19 and June 25, 2020. Psychosocial outcomes assessed were COVID-19 worries, quality of life, feelings of social isolation, psychological distress, diabetes distress, anxiety, and general and diabetes-specific loneliness. Trajectories in psychosocial health were analyzed with linear multilevel mixed-effects models. Subgroup analyses were conducted. RESULTS: In total, 1366 (56%) people with diabetes responded to the first questionnaire. COVID-19 worries, feelings of social isolation, psychological distress, anxiety and general loneliness had all improved at Q6 compared to Q1 (p < 0.001). In general, improvements in psychosocial health started after the first reopening phase (April 15); however, general loneliness increased up to the first reopening phase (p ≤  0.001) before decreasing, and quality of life decreased up to the first reopening phase (p = 0.002), with no improvements to follow. Subgroup analyses revealed that women had larger decreases in feelings of social isolation (p < 0.001) and in psychological distress (p = 0.035) and increases in quality of life (p < 0.001), between Q1 and Q6, compared to men. CONCLUSIONS: Psychosocial health in people with diabetes improved following reopening of society. However, increases in loneliness and decreases in quality of life during lockdown indicates a potential need to mitigate the acute effects of such policies.

Testing an analogue game to promote peer support and person-centredness in education for people with diabetes: A realist evaluation.

AIM: To explore the outcomes of testing an analogue game to incorporate person-centredness and peer dialogues in group-based diabetes education targeting people with diabetes. DESIGN: Realist evaluation using quantitative and qualitative methods to explore context, mechanisms and outcomes of the intervention. METHODS: In March-July 2019, the game was tested among 76 people with type 2 diabetes and 17 professionals in 19 settings across nine Danish municipalities. Data consisted of game tests, interviews and questionnaires. Data were analysed using systematic text condensation and descriptive statistics. RESULTS: Outcomes of using the game were as follows: (a) a playful atmosphere; (b) active engagement; c) reflections on diabetes-specific experiences; (d) focused dialogues; (e) professionals gaining insight into the needs of participants; and (f) professionals experiencing peer dialogue as important to incorporate into education. Questionnaire responses showed that 92% people with diabetes and 94% professionals found that the game incorporated person-centredness and peer dialogues into education.

A co-design study to develop supportive interventions to improve psychological and social adaptation among adults with new-onset type 1 diabetes in Denmark and the UK.

OBJECTIVE: To develop supportive interventions for adults with new-onset type 1 diabetes (T1D) to facilitate positive adaptive strategies during their transition into a life with diabetes. DESIGN: The study used a co-design approach informed by Design Thinking to stimulate participants' reflections on their experiences of current care and generate ideas for new supportive interventions. Visual illustrations were used to depict support needs and challenges. Initial discussions of these needs and challenges were facilitated by researchers and people with diabetes in workshops. Data comprising transcribed audio recordings of the workshop discussions and materials generated during the workshops were analysed thematically. SETTINGS: Specialised diabetes centres in Denmark and the United Kingdom. PARTICIPANTS: Adults with new-onset T1D (n=24) and healthcare professionals (HCPs) (n=56) participated in six parallel workshops followed by four joint workshops with adults (n=29) and HCPs (n=24) together. RESULTS: The common solution prioritised by both adults with new-onset T1D and HCP participants was the development of an integrated model of care addressing the psychological and social elements of the diagnosis, alongside information on diabetes self-management. Participants also indicated a need to develop the organisation, provision and content of care, along with the skills HCPs need to optimally deliver that care. The co-designed interventions included three visual conversation tools that could be used flexibly in the care of adults with new-onset T1D to support physical, psychological and social adaptation to T1D. CONCLUSION: This co-design study has identified the care priorities for adults who develop T1D, along with some practical conversational tools that may help guide HCPs in attending to the disruptive experience of the diagnosis and support adults in adjusting into a life with diabetes.

"Mental Health Professionals Have Never Mentioned My Diabetes, They Don't Get Into That": A Qualitative Study of Support Needs in Adults With Type 1 and Type 2 Diabetes and Severe Mental Illness.

OBJECTIVES: People with severe mental illness (SMI) have a 2- to 3-fold higher risk of developing type 2 diabetes (DM), an increased risk of subsequent DM complications, higher mortality and poorer health-related quality of life. Although mental health professionals have an important role in supporting people with SMI in diabetes management, their primary focus is often on mental health, not physical conditions. Few studies have investigated patients' experiences of living with coexisting SMI and DM to identify their needs for diabetes support from mental health professionals. METHODS: Semistructured interviews were conducted with 15 adults with SMI and DM. Interviews were transcribed and analyzed using systematic text condensation. RESULTS: Five themes emerged from the data: 1) mental illness overshadows diabetes management, 2) mental state substantially influences diabetes care, 3) daily diabetes routines are challenging to maintain, 4) diabetes is burdensome and 5) dialogue about diabetes with mental health professionals is infrequent. CONCLUSIONS: Self-managing DM is extremely complex for patients who also live with SMI. Diabetes care is strongly influenced by emotional and mental states and the ability to establish daily routines. A need exists to enhance support from mental health professionals to improve DM self-management among people with mental illness. The present findings can inform the development of tailored interventions to support people with mental illness in DM self-management.

Changes in diabetes distress among people with type 2 diabetes during a risk screening programme for diabetic kidney disease - Longitudinal observations of the PRIORITY study.

AIMS: To investigate levels and changes in diabetes distress over the course of the PRIORITY (Proteomic prediction and Renin angiotensin aldosterone system Inhibition prevention Of early diabetic nephRopathy In people with TYpe 2 diabetes and normoalbuminuria) randomised controlled trial of screening for diabetic kidney disease (DKD) risk among people with type 2 diabetes (T2D) at a specialist diabetes clinic in Denmark. METHODS: Of 436 trial participants with T2D, 216 were invited to complete the 17-item diabetes distress scale at the time of screening (T1, n = 180), immediately after receiving the screening results at 6-8 weeks (T2, n = 169), and at 12 months follow up (T3, n = 107). Linear mixed models were used to explore changes in diabetes distress. RESULTS: No significant changes in diabetes distress were observed between the time of screening, receiving results, and at 12 months. Changes in diabetes distress were not influenced by diabetes empowerment, sense of coherence, or perceived support for diabetes self-management. CONCLUSIONS: In contrast to previous studies demonstrating that screening programmes can have negative psychological consequences, our findings indicate that participating in this screening programme for DKD does not influence emotional burden or physician-related distress among people with T2D.

The effect of peer support in adults with insulin pump-treated type 1 diabetes: a pilot study of a flexible and participatory intervention.

AIM: The aim of this study was to explore the effects of a flexible and participatory peer support intervention in a clinical setting for adults with type 1 diabetes treated with an insulin pump, focusing on enhancing diabetes-specific social capital. The key questions were as follows: 1) what effects are appropriate to expect, according to participants? and 2) to what extent did these effects occur? METHODS: Two peer support intervention programs were conducted in a diabetes specialist clinic (N=30). A participatory and adaptable approach allowed flexibility in the content of peer support meetings, which were facilitated by a diabetes nurse. Individual interviews explored participants' perception of effects of the intervention. Interview data were analyzed qualitatively. Participants (n=27) completed a baseline and postintervention questionnaire that included items assessing diabetes empowerment, diabetes distress, diabetes-specific social support, and diabetes loneliness. HbA1c levels were compared before and after the intervention. RESULTS: Participants experienced enhanced diabetes-specific social capital, diabetes motivation, awareness of personal diabetes practices, and serenity and openness in life with diabetes. They also became more aware of treatment and support possibilities. Negative effects included feeling sad or upset after the meetings or feeling different than and not as well-controlled as other participants. Quantitative analyses showed enhanced social support, decreased eating distress and trends toward enhanced diabetes empowerment, decreased diabetes loneliness, and decreased diabetes distress (powerlessness). We found fewer positive and/or negative outcomes among participants who felt no need for peer support or felt that the group was not a unit or that important issues were not addressed. CONCLUSION: The study indicated that flexible and participatory peer support can strengthen diabetes-specific social capital and improve participants' well-being and diabetes empowerment. Awareness of participants' incentives for attending peer support, as well as the risk of people feeling isolated within peer support groups, is essential to creating effective diabetes-specific social support.