American journal of kidney diseases : the official journal of the National Kidney Foundation · 2026
Evolution of Stakeholder Involvement and Scope of Research Priority-Setting Studies in Kidney Disease: A Systematic Review.
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Coghlan Dale, Jaure Allison, Craig Jonathan C, Jesudason Shilpanjali, Guha Chandana, Wong Germaine, Chando Shingisai, Crowe Sally, Manns Braden, Hemmelgarn Brenda, Winkelmayer Wolfgang C, Scholes-Robertson Nicole
Аннотация
RATIONALE & OBJECTIVE: Kidney research that explicitly includes patient and caregiver perspectives has been identified as a priority. This study aimed to assess the evolution of research studies on priority-setting in kidney disease, including the clinical scope of priorities and the extent of stakeholder involvement.
STUDY DESIGN: Systematic review.
SETTING & STUDY POPULATIONS: Studies conducted to identify research priorities in kidney disease that elicited the perspectives of patients, caregivers, researchers, clinicians, or policymakers.
SELECTION CRITERIA FOR STUDIES: MEDLINE, EMBASE, PsycINFO, and CINAHL were searched from database inception to January 20, 2025.
DATA EXTRACTION: Full texts assessed independently by two reviewers.
ANALYTICAL APPROACH: Descriptive synthesis.
RESULTS: Thirty-four studies involving more than 3,709 stakeholders (clinicians (n=1976), patients (n=768), caregivers (n=114), researchers (n=232), and policymakers (n=63)) were included. Eight studies were multinational, with the remaining conducted in five countries (all high income). Almost all were published since 2000, with over half since 2015. Explicit patient and caregiver involvement increased from 25% (4/16) pre-2015 to 80% (16/18) in 2015 or later, with a priority-setting framework explicitly used in 38% (6/16) of studies pre-2015, and 50% (9/18) of studies in 2015 or later. REPRISE checklist reporting showed some increase in domain-level reporting over time with substantial gaps remaining (overall around 30%). Temporal trends demonstrated a broadening of research priorities from a common singular focus on medical treatments, towards inclusion of domains such as psychosocial and educational supports, health services, and equitable access to care across the spectrum of chronic kidney disease.
LIMITATIONS: Restricted to peer-reviewed, English-language publications.
CONCLUSIONS: Research priority-setting studies in kidney disease are becoming more common, are increasingly including patients/caregivers, and have become broader in scope over time. However, significant gaps remain, related to studies in low- and middle-income settings, the consistent inclusion end-users of research, and the completeness of reporting.
STUDY DESIGN: Systematic review.
SETTING & STUDY POPULATIONS: Studies conducted to identify research priorities in kidney disease that elicited the perspectives of patients, caregivers, researchers, clinicians, or policymakers.
SELECTION CRITERIA FOR STUDIES: MEDLINE, EMBASE, PsycINFO, and CINAHL were searched from database inception to January 20, 2025.
DATA EXTRACTION: Full texts assessed independently by two reviewers.
ANALYTICAL APPROACH: Descriptive synthesis.
RESULTS: Thirty-four studies involving more than 3,709 stakeholders (clinicians (n=1976), patients (n=768), caregivers (n=114), researchers (n=232), and policymakers (n=63)) were included. Eight studies were multinational, with the remaining conducted in five countries (all high income). Almost all were published since 2000, with over half since 2015. Explicit patient and caregiver involvement increased from 25% (4/16) pre-2015 to 80% (16/18) in 2015 or later, with a priority-setting framework explicitly used in 38% (6/16) of studies pre-2015, and 50% (9/18) of studies in 2015 or later. REPRISE checklist reporting showed some increase in domain-level reporting over time with substantial gaps remaining (overall around 30%). Temporal trends demonstrated a broadening of research priorities from a common singular focus on medical treatments, towards inclusion of domains such as psychosocial and educational supports, health services, and equitable access to care across the spectrum of chronic kidney disease.
LIMITATIONS: Restricted to peer-reviewed, English-language publications.
CONCLUSIONS: Research priority-setting studies in kidney disease are becoming more common, are increasingly including patients/caregivers, and have become broader in scope over time. However, significant gaps remain, related to studies in low- and middle-income settings, the consistent inclusion end-users of research, and the completeness of reporting.