Patient Prioritization of End-stage Renal Disease Symptoms

Although there is existing literature regarding symptoms experienced by patients with end-stage renal disease (ESRD) receiving in-center hemodialysis, AIR conducted a series of projects supported by the American Society of Nephrology’s (ASN’s) Kidney Health Initiative (KHI) to fill a research gap regarding which symptoms patients prioritize for the development of new or improved treatments to support symptom relief and improve quality of life.

In a two-phase, sequential, mixed-methods study, AIR first conducted exploratory focus groups to better understand symptom experiences among diverse patients, as well as their prioritized domains of symptoms for developing new or improved therapies. Findings were subsequently used to develop and administer an online patient survey to assess symptom experiences of greatest concern to an expanded group of patients with ESRD.

The top-prioritized symptoms were consistent across focus group and survey participants and included the physical symptoms insomnia, fatigue, and cramping, and the mood symptoms anxiety, depression, and frustration. Participants indicated that symptom frequency, duration, unpredictability, and social and financial effects factored most heavily into symptom prioritization.

These findings inform future intervention-focused research targeting symptom improvement, and yielded, though subsequent work, a manuscript that serves as a “call-to-action” for the field of symptom treatment and management for in-center hemodialysis patients that outlines promising practices, challenges, key opportunities in both research and practice, and priorities for the field as a whole.

Understanding that research engagement can be a barrier to advancing therapies and interventions for the ESRD community, AIR subsequently partnered with the UNC Kidney Center to convene approximately 75 diverse local dialysis facility stakeholders (e.g., researchers, clinicians, staff, patients and advocates) to discuss facilitators and barriers to research engagement and to develop a national roadmap for improving the research capacity of local dialysis facilities. This roadmap culminated in a manuscript, “Cultivating a Research-Ready Dialysis Community,” published in the Journal of the American Society of Nephrology, which outlines promising practices, challenges, and key opportunities in both research and clinical practice.