The ICHOM standard set for patient reported outcomes in diabetes

Abstract Background Between 2017-2018, the International Consortium for Health Outcomes Measurement (ICHOM) conducted a targeted study to deliver a standard set of outcome measures in diabetes, including patient reported outcomes. Compared to other conditions, the study faced the challenge of a complex data collection in a highly prevalent multifactorial chronic disease. Methods We conducted a structured systematic review of outcome measures focusing on adults with either Type 1 or Type 2 diabetes, followed by a consensus-driven modified Delphi panel including a multidisciplinary group of academics, health professionals and patient representatives. The applicability of the standard set was explored by collecting external feedback from patients and health professionals worldwide. Results The panel identified an essential set of case-mix characteristics and clinical outcomes, including factors related to diabetes control, acute events, chronic complications, health services and survival that can be regularly measured using routine data and ad hoc data collection. Three validated instruments were recommended for ad-hoc data collection of patient-reported outcomes: the “WHO-5” for psychological wellbeing, the “PAID” for diabetes distress and the “PHQ-9” for depression. The feedback received from members of the panel highlighted substantial challenges with regards to the applicability of the approach at a large scale. Conclusions The standard set recommended for use to monitor, benchmark and improve diabetes care has received strong support from stakeholders involved in the process worldwide. However, substantial challenges remain on how to organize a systematic data collection worldwide, with implications on policy and practice that can equally apply across all areas of chronic care. Prioritization of selected targets may be useful to achieve practical results in the immediate future. Key messages A standard set for the data collection of person-centred outcomes in diabetes has been successfully delivered by ICHOM, including case-mix characteristics, clinical and person reported outcomes. The feedback received from a range of stakeholders highlight implications for policy and practice in the data collection of PROMs for person-centred chronic disease monitoring.