Patient and Caregiver Involvement in Identifying and Designing Interventions for Trials in Chronic Kidney Disease: A Scoping Review.

Background: Patient and caregiver involvement in identifying and designing health interventions can enhance the acceptability and uptake of interventions for person-centered care and outcomes. Our aim was to describe the approaches used to involve patients and caregivers in the identification and design of interventions in chronic kidney disease (CKD).

Methods: Electronic databases were searched to April 2024 for articles that described the involvement of patients and caregivers in the identification and design of interventions for research in CKD. The findings were synthesized using a framework that addressed the type of intervention, purpose and reason of involvement, population involved, mode of involvement, and impacts of patient/caregiver involvement on the intervention.

Results: We identified 14 studies that involved patients with CKD (n = 238) and/or caregivers (n = 36). The types of interventions included psychosocial, educational, lifestyle, and navigator programs. Patients and caregivers were involved to identify and prioritize features of the intervention, describe their lived experience to inform the intervention, provide feedback on intervention design, and identify potential facilitators and barriers to the uptake of the intervention. Patients and caregivers were involved as members of steering committees and advisory groups, and participated through workshops, interviews, focus groups, meetings, and an online messaging forum. The input of patients and caregivers resulted in the addition and changes to intervention features (e.g., content, structure, delivery, and materials) to personalize the intervention and to improve its inclusivity, accessibility, and suitability.

Conclusion: Very few studies have described patient and caregiver involvement in the identification and design of interventions for research in CKD. Patients and caregivers were mostly involved in developing educational, lifestyle, and navigator interventions. Further efforts to involve patients and caregivers in developing interventions for research can help maximize the uptake and impact of person-centered interventions.