Nothing About Us Without Us: A Scoping Review and Priority-Setting Partnership in Type 1 Diabetes and Exercise

Objectives: Examine the characteristics of patient engagement (PE) practices in exercise-based randomized trials in type 1 diabetes (T1D), and facilitate T1D stakeholders in determining the top ten list of priorities for exercise research. Design: Two methodological approaches were employed: a scoping review and a modified James Lind Alliance priority-setting partnership. Methods: Published (Medline, Embase, CINAHL, and Central databases) and grey literature (www.clinicaltrials.gov) were searched to identify randomized controlled trials of exercise interventions lasting minimum four weeks and available in English. We extracted information on PE and patient-reported outcomes (PROMs) to identify if patient perspectives had been implemented. Based on results, we set out to determine exercise research priorities as a first step towards a patient-engaged research agenda. An online survey was distributed across Canada to collect research questions from patients, caregivers and healthcare providers. We qualitatively analyzed submitted questions and compiled a long-list that a twelve-person stakeholder steering committee used to identify the top ten priority research questions. Results: Of 9,962 identified sources, 19 published trials and 4 trial registrations fulfilled inclusion criteria. No evidence of PE existed in any included study. Most commonly measured PROMs were frequency of hypoglycemia (n=7) and quality of life (n=4). The priority-setting survey yielded 194 submitted research questions. Steering committee rankings identified 10 priorities focused on lifestyle factors and exercise modifications to maintain short-term glycemic control. Conclusion: Recent exercise-based randomized trials in T1D have not included PE and PROMs. Patient priorities for exercise research have yet to be addressed with adequately designed clinical trials.