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.