The participatory development of a national core set of person-centred diabetes outcome constructs for use in routine diabetes care across healthcare sectors

Abstract

Plain English Summary Outcome of diabetes care is mainly measured using clinical indicators such as long-term blood sugar (A1c), cholesterol, blood pressure, occurrence of diabetes complications and need for hospitalisation. Other factors such as quality of life, well-being, treatment burden and other psychosocial issues are of high importance to people with diabetes and their family members, but these factors are often not included in outcome evaluations and there is a lack of agreement about what to measure. This study set out to define how to measure outcomes of diabetes care that both adequately reflects priorities and needs of people with diabetes and contributes to ongoing improvement. Twenty-one people with diabetes and 5 family members were invited to take part in interview and workshop activities to identify their views and priority outcomes. Results were summarised and used to guide the establishment of a national core set of diabetes outcomes. In addition to clinical indicators, the following core outcomes were identified as important in order to adequately evaluate outcomes of diabetes care which matter to people with diabetes: self-reported health, psychological well-being, diabetes-related emotional distress, diabetes-related quality of life, symptom distress, treatment burden, impact of hypoglycemia, confidence in self-management and access to person-centred diabetes care and support. Involvement of people with diabetes helped fill important gaps in knowledge about how to measure outcomes of diabetes care that matter to people with diabetes. Future research is needed involving people with diabetes as partners in identifying how to best measure these outcomes as part of routine diabetes care.

Keywords

• Health outcomes
• Diabetes outcomes
• User participation
• Patient involvement
• Participatory research
• Qualitative research