Validation of the type 1 diabetes distress scale (T1-DDS) in a large Danish cohort: Content validation and psychometric properties.

Aim: To validate the Type 1 Diabetes Distress Scale (T1-DDS) in a large sample of adults with Type 1 diabetes (T1D) from diabetes clinics in Denmark. Methods: Altogether 40 adults with T1D were interviewed to explore the content of T1-DDS in a Danish setting and to validate the translation of the T1-DDS into Danish. Subsequently, a survey including T1-DDS, the Problem Areas In Diabetes scale (PAID-20), fear of hypoglycemia, social support, and diabetes duration was answered by 2201 people with T1D. Other person characteristics were collected from the National Patient Register. HbA1c was obtained from the Clinical Laboratory Information System. Data distribution, internal consistency, convergent and construct validity, factor structure, three weeks retest, and cut-points were explored. Results: Interview data supported the relevance of all T1-DDS items for the assessment of diabetes distress among adults with T1D. The T1-DDS showed good content and acceptable construct validity, and the ability to detect high diabetes distress levels. A high correlation between T1-DDS and PAID-20 (rho = 0.91) was found. The retest scores showed a good reliability (all rho ≥0.68) with the highest variability in the Friends/Family Distress and Physician Distress subscales and the lowest variability in the Powerlessness and Eating Distress subscales of the T1-DDS. Qualitative findings pointed out relevant concerns of people with T1D, which were not included in the T1-DDS. Conclusion: The study supports the use of the Danish T1-DDS, but also highlights that existing diabetes distress questionnaires including T1-DDS do not cover all potential diabetes stressors and worries.

Psychosocial aspects and perspectives of adult-onset type 1 diabetes: A systematic scoping review.

AIM: To map existing research on psychosocial aspects of adult-onset type 1 diabetes (T1D), including psychosocial health status, ways psychosocial aspects may affect management of T1D in everyday life, and interventions targeting management of adult-onset T1D. METHODS: We conducted a systematic search in MEDLINE, EMBASE, CINAHL and PsycInfo. Search results were screened with predefined eligibility criteria, followed by data extraction of the included studies. Charted data were summarized in narrative and tabular form. RESULTS: We included 10 reports describing nine studies from the 7302 identified in the search. All studies were conducted in Europe. Participant characteristics were missing in several studies. Five of the nine studies incorporated psychosocial aspects as the main aim of the study. Limited information on psychosocial aspects was available in the remaining studies. We identified three overarching themes related to psychosocial aspects: (1) the impact of the diagnosis on everyday life, (2) the influence of psychosocial health on metabolic levels and adaptation, and (3) provision of self-management support. CONCLUSIONS: Research focussing on psychosocial aspects of the adult-onset population is scarce. Future research should involve participants across the adult life age span and from a wider geographical area. Sociodemographic information should be collected to explore different perspectives. Further exploration of suitable outcome measures considering adults' limited experience of living with the condition is needed. This would help to better understand how psychosocial aspects may affect management of T1D in everyday life and thus enable healthcare professionals to provide appropriate support to adults with new-onset T1D.

Achieving a useful and person-centred diabetes consultation is a shared responsibility between diabetologists and people with diabetes: a qualitative study of perspectives from people with type 1 diabetes.

AIMS: To explore perceptions of useful routine consultations with diabetologists from the perspective of adults with type 1 diabetes, including preferences for discussing psychosocial issues. METHODS: We conducted semi-structured interviews in 2018/2019 with 33 people with type 1 diabetes (age 22-75 years, 20 men and 13 women, median diabetes duration 25 years) recruited from two diabetes clinics in the capital region of Denmark. Interviews were audio recorded, transcribed verbatim and analysed using thematic text condensation. RESULTS: Achieving a useful consultation was perceived as a shared responsibility between people with diabetes and diabetologists. Participants' perspectives of what constitutes a useful consultation and expectations for both consultation and diabetologist varied in relation to perceptions of (1) the interaction between the person with diabetes and diabetologist, including being prepared, being honest, experiencing good rapport and preferring a partnership with the diabetologist or 'keeping it clinical' and (2) the diabetologist's approach to diabetes care, including providing up-to-date knowledge and listening and showing understanding. CONCLUSIONS: Both content and style of diabetes consultations need to be adapted to the individual person with type 1 diabetes. People with diabetes have an important role in expressing their needs and preferences related to both content and style. Diabetologists need to be aware of and attentive to the many individual needs and expectations among people with diabetes, including the desire and need to discuss psychosocial issues. Dialogue tools for preparation and in consultations may enable people with diabetes to voice their needs and expectations and diabetologists to juggle these diversities.

Diabetes and COVID-19: psychosocial consequences of the COVID-19 pandemic in people with diabetes in Denmark-what characterizes people with high levels of COVID-19-related worries?

AIM: To map COVID-19-specific worries and overall psychosocial health among people with diabetes in the initial phase of the COVID-19 pandemic in Denmark, and to explore characteristics of people with diabetes and high levels of worries related to the COVID-19 pandemic. METHODS: A cross-sectional survey was conducted by distributing online questionnaires to 2430 adult members (> 18 years) of two user panels consisting of people with diabetes who have volunteered to share information about their life with diabetes. The questionnaire included items on COVID-19-specific worries as well as such worries related to diabetes, sociodemographic and health status, social relations, diabetes-specific social support, diabetes distress and changes in diabetes-specific behaviours. Responses were analysed with descriptive statistics and logistic regressions. RESULTS: People with diabetes have COVID-19-specific worries related to their diabetes. More than half were worried about being overly affected due to diabetes if infected with COVID-19, about one-third about being characterized as a risk group due to diabetes and not being able to manage diabetes if infected. Logistic regressions showed that being female, having type 1 diabetes, diabetes complications and diabetes distress, feeling isolated and lonely, and having changed diabetes behaviours were associated with being more worried about COVID-19 and diabetes. CONCLUSION: People with diabetes have COVID-19-specific worries related to their diabetes which is associated with poorer psychosocial health. These worries should be addressed through support targeting specific questions and needs of individuals with diabetes as well as frequent updates on new knowledge regarding COVID-19 and diabetes.

Perceptions and experiences of living with coexisting type 2 diabetes and severe mental illness: a scoping review.

AIMS: To map existing research-based knowledge of everyday life and illness management among people with coexisting type 2 diabetes and severe mental illness, and to identify study designs, aims, populations and themes. METHODS: A systematic literature search was performed on 16 April 2019 using Medline, Embase, PsycINFO, Cinahl, the Cochrane Library, and the Web of Science to conduct a scoping review. Included studies were summarized with regard to the quantity of research, the study designs, aims, populations and themes RESULTS: From 3406 records, we included 23 studies about everyday life and illness management among people with coexisting type 2 diabetes and severe mental illness. Four studies were qualitative (observations, interviews and focus groups), and 19 were quantitative (observational and interventions) and used questionnaires. Five themes emerged in the findings: (1) diet and exercise, but not other diabetes self-care activities, are consistently compromised in the target group; (2) psychiatric exacerbation diminishes diabetes self-care; (3) social support and high self-efficacy improve diabetes self-care; (4) use of healthcare services is compromised; and (5) quality of life and well-being is poor. CONCLUSIONS: The limited research into the studied population's experiences with coexisting type 2 diabetes and severe mental illness is characterized by its heterogeneity in aims and methods and a strong focus on diabetes management and treatment. Further research focusing on the management of both conditions in everyday life is needed to improve specialized and integrated care targeting the population.

Diabetes distress in Type 1 diabetes--a new measurement fit for purpose.

AIMS: To examine and assess (1) the internal consistency and validity of a Danish translation of the Diabetes Distress Scale (DDS17) among adults with Type 1 diabetes mellitus, (2) the properties of the brief version of DDS17 and (3) cut points for the DDS17. METHODS: Cross-sectional survey of 2419 adults with Type 1 diabetes mellitus. Validated scales and questions measured diabetes distress (DDS17), diabetes empowerment (DES-SF), healthy diet, physical activity, self-rated health (SF-12) and quality of life (WHOQoL-BREF). An electronic patient record provided information about glycaemic control (HbA(1c)). We examined internal consistency, construct validity, subscale construction and cut points for determining clinically relevant diabetes distress, as well as two- and four-item brief versions of the DDS17. RESULTS: The DDS17 had a Cronbach's alpha of 0.92; subscale alphas were 0.83-0.89. A four-factor division into subscales was appropriate and the division corresponded closely to the four domains described in the development of the DDS17. The DDS17 correlated well with relevant measures; higher distress was correlated with low diabetes empowerment, low quality of life, unhealthy diet, not being physically active, poor glycaemic control and low scores on the mental component score of the SF-12. A two-item brief scale performed as well as a four-item version. The relationship between DDS17 and outcomes did not suggest distinct cut points for DDS17. CONCLUSIONS: Our results provide support for the use of this Danish adaptation of the DDS17 for assessing psychosocial distress among adults with Type 1 diabetes mellitus.