Patient-Reported Experience and Outcome Measures in People Living with Diabetes: A Scoping Review of Instruments

Background Diabetes mellitus is a global public health concern, with over 463 million people living with this chronic disease. Pathology complexity, management difficulty, and limited participation in care has resulted in healthcare systems seeking new strategies to engage people living with diabetes. Patient-reported experience measures (PREMs) and patient-reported outcome measures (PROMs) were developed to address the gap between the healthcare system expectation and patient preference. Objective This study aimed to review the existing literature on PREMs and PROMs specific to type 1 and 2 diabetes, and report the dimensions report the dimensions they have measured. Methods A scoping review was conducted from January 1985 to March 2020 of six databases, MEDLINE, EMBASE, PsycINFO, CINHAL, Scopus, and BiblioPro, to identify PREM and PROM instruments specific for type 1 and 2 diabetes. Results Overall, 34 instruments were identified, 32 PROMs and two PREMs. The most common instrument included outcomes related to quality of life at 44% (n = 15), followed by satisfaction (whether with treatment, device, and healthy habits) at 26% (n = 9). Furthermore, instruments regarding personal well-being accounted for 15% (n = 5). For instruments that measure experiences of persons with diabetes, there were two scales of symptoms, and one related to the attitude patients have toward the disease. Conclusions Diabetes-specific validated instruments mainly focus on quality of life, education, and treatment, and sometimes overlap each other, in their subscales and assessment dimensions. Constructs such as cultural and religious beliefs, leisure, and work life may need more attention. There appears to be a gap in instruments to measure experiences of individuals who “live with diabetes” and seek to lead a “normal life.”