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.
The specific objectives of this study were to: 1. characterise the perspectives of PWD and FM
regarding what outcome constructs are important and required for adequate ongoing evaluation of outcomes of diabetes care and 2. establish a national core set of diabetes outcome constructs for type 1 and 2 diabetes which refects person-centred diabetes research and is ratified by PWD, HCP and payer stakeholders.
Skovlund, S. E., L. H. Troelsen, L. Klim, P. E. Jakobsen and N. Ejskjaer
Disease Category: Endocrine & metabolic
Disease Name: Diabetes
Age Range: Unknown
Sex: Either
Nature of Intervention:
- Clinical experts
- Consumers (caregivers)
- Consumers (patients)
- Other
- Researchers
- COS for practice
- Consensus meeting
- Focus group(s)
- Semi structured discussion
Step 1: A half-day multi-method patient/family member workshop event consisting of focus group, plenary and co-creation group work activities. Step 2: Informed by Step 1, a consensus process was undertaken with a multi-disciplinary expert working group.