ABSTRACT
BACKGROUND: This study sought to utilise participatory research methods to identify the perspectives of people with diabetes regarding which diabetes outcomes were most important to them. These findings were then used to support an expert working group representing multiple health sectors and healthcare disciplines and people with diabetes to establish a core set of patient-important outcome constructs for use in routine diabetes care. METHODS: 26 people with diabetes and family members were recruited through purposive sampling to participate in interviews, focus groups, voting and plenary activities in order to be part of identifying outcome constructs. Content and qualitative analysis methods were used with literature reviews to inform a national multi-stakeholder consensus process for a core set of person-centred diabetes outcome constructs to be used in routine diabetes care across health care settings. RESULTS: 21 people with diabetes and 5 family members representing type 1 and 2 diabetes and a range of age groups, treatment regimens and disease burden identified the following patient-reported outcome constructs as an important supplement to clinical indicators for outcome assessment in routine diabetes care: self-rated health, psychological well-being, diabetes related emotional distress and quality of life, symptom distress, treatment burden, blood sugar regulation and hypoglycemia burden, confidence in self-management and confidence in access to person-centred care and support. Consensus was reached by a national multi-stakeholder expert group to adopt measures of these constructs as a national core diabetes outcome set for use in routine value-based diabetes care. CONCLUSIONS: We found that patient-reported outcome (PRO) constructs and clinical indicators are needed in core diabetes outcome sets to evaluate outcomes of diabetes care which reflect key needs and priorities of people with diabetes. The incorporation of patient-reported outcome constructs should be considered complementary to clinical indicators in multi-stakeholder value-based health care strategies. We found participatory research methods were useful in facilitating the identification of a core prioritised set of diabetes outcome constructs for routine value-based diabetes care. The use of our method for involving patients may be useful for similar efforts in other disease areas aimed at defining suitable outcomes of person-centred value-based care. Future research should focus on developing acceptable and psychometrically valid measurement instruments to evaluate these outcome constructs as part of routine diabetes care.
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.
