Patient Engagement in the Design and Conduct of the HOPE Trial: Addressing Chronic Pain in Hemodialysis Patients.

White DM, Kimmel PL, Dember LM, Wilkie C, Edwards DP, Williams J, Bernardo L, Quintana N, Cheatle MD, Lash JP, Fischer MJ, Schmidt R, Doorenbos A, Schrauben S, Johansen KL, HOPE Consortium, a member of the HEAL Initiative. Patient Engagement in the Design and Conduct of the HOPE Trial: Addressing Chronic Pain in Hemodialysis Patients. Clinical journal of the American Society of Nephrology : CJASN. 2025 Oct 1; 20(10):1461-1469, DOI: 10.2215/CJN.0000000866.

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Abstract:

The HOPE Consortium Trial to Reduce Pain and Opioid Use in Hemodialysis was a randomized, controlled trial funded by the National Institute of Diabetes and Digestive and Kidney Diseases. Patients on hemodialysis suffering from chronic pain were randomly assigned to receive usual care or a 12-week pain coping skills training program delivered remotely by trained coaches followed by 12 weeks of skills reinforcement via interactive voice response. Patient advisors participated in all stages of the study, including study design and development of recruitment materials. During the trial, patient advisors met monthly as an Advisory Board. In addition, patient advisors participated in all Steering Committee meetings, including in-person meetings and biweekly remote meetings. Patient advisors were represented on all study committees, with particularly extensive involvement in the Recruitment and Retention Committee. Patient advisors made important contributions to study design and conduct. Their involvement was critical to the study''s successful enrollment and retention of study participants. Patient advisors characterized their involvement positively. They attributed their satisfaction with the experience to their full integration into in all aspects of the study and their treatment as equal partners. Several patient advisors have subsequently taken on other research, patient advocacy, or leadership roles, facilitated in part through their participation in the HOPE Trial. This study details the ways patient advisors were enlisted and decided to participate; outlines their many contributions; describes their experience; and provides guidance on how researchers can successfully incorporate patient advisors into future studies.