Back
The involvement of patients and caregivers in trials can help to improve the recruitment, retention, acceptability, uptake and impact of the intervention. Throughout the Structured exercise program to reduce fatigue in patients receiving dialysis trial (M-FIT), consumers have been involved in all stages of the trial. The last type of involvement has been with the convening of a Consumer Advisory Board (CAB). In this involvement, consumers have provided guidance and input across all stages of the designing process. The aim is to describe the role and impact that a consumer advisory board has had in the M-FIT trial.
We convened a CAB involving 8 patients from Australia and New Zealand. The CAB sits in a core position within the Governance structure of this trial, which allows them to provide input in trial design, implementation and dissemination of findings to both the Global Steering Committee and the Trial Management Committee. Since August 2022, six online meetings have been held lasting one hour each. The consumer advisory board has provided input in the design of the intervention (the mobile application, exercise program, reviewing the M-FIT website content, surveys and health care diary) and data collection.
The mobile application that patients will use during the trial to complete surveys and perform the exercises was optimised by making it more consumer friendly. They provided feedback to simplify and refine the organization and the way to complete the surveys and the health care diary. They also suggested a better organization of the M-FIT website content, and the display of the exercises videos. Moreover, they provided feedback on the way to navigate throughout the app and the addition of notifications with motivational statements. In addition, the exercise interventions were modified for feasibility. For example, ensuring that exercises were safe and feasible for patients with a fistula during arm exercises. Finally, the data collection process was refined to reduce respondent burden (for example, by reducing the number of surveys).
The consumer advisory board for the M-FIT trial provided valuable suggestions for the trial's design through the refinement of the data collection, optimization of the mobile application and enhancement of the intervention. By addressing patient priorities for intervention design, this will improve the acceptability and feasibility of the intervention. A similar abstract was submitted at the 58th Australian and New Zealand Society of Nephrology (ANZSN) Annual Scientific Meeting 2023.