Andrea Matus González1, Talia Gutman2, Pamela Lopez-Vargas2, Samaya Anumudu3, Cristina M Arce4, Jonathan C Craig5, Louese Dunn6, Kai-Uwe Eckardt7, Tess Harris8, Andrew S Levey9, Liz Lightstone10, Nicole Scholes-Robertson2, Jenny I Shen11, Armando Teixeira-Pinto2, David C Wheeler12, Dave White13, Martin Wilkie6, Michel Jadoul14, Wolfgang C Winkelmayer3, Allison Tong2. 1. Sydney School of Public Health, The University of Sydney, Sydney; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia. Electronic address: andrea.matusgonzalez@sydney.edu.au. 2. Sydney School of Public Health, The University of Sydney, Sydney; Centre for Kidney Research, The Children's Hospital at Westmead, Westmead, NSW, Australia. 3. Selzman Institute for Kidney Health, Section of Nephrology, Baylor College of Medicine, Houston. 4. Dallas Renal Group, Dallas, TX. 5. College of Medicine and Public Health, Flinders University, Adelaide, Australia. 6. Sheffield Kidney Institute, Sheffield Teaching Hospitals NHS Foundation Trust, Sheffield, United Kingdom. 7. Department of Nephrology and Medical Intensive Care, Charité - Universitätsmedizin Berlin, Berlin, Germany. 8. Polycystic Kidney Disease International, London, United Kingdom. 9. Division of Nephrology, Tufts Medical Center, Boston, MA. 10. Centre for Inflammatory Disease, Faculty of Medicine, Imperial College London, London, United Kingdom. 11. Division of Nephrology and Hypertension, Harbor-UCLA Medical Center, Torrance, CA. 12. Centre for Nephrology, University College London, London, United Kingdom; George Institute for Global Health, Sydney, Australia. 13. Center for Health Action and Policy, The Rogosin Institute, New York, NY. 14. Department of Nephrology, Cliniques universitaires Saint-Luc, Université catholique de Louvain, Brussels, Belgium.
Abstract
RATIONALE & OBJECTIVE: Patients with chronic kidney disease (CKD) are at an increased risk for premature death, cardiovascular disease, and burdensome symptoms that impair quality of life. We aimed to identify patient and caregiver priorities for outcomes in CKD. STUDY DESIGN: Focus groups with nominal group technique. SETTING & PARTICIPANTS: Adult patients with CKD (all stages) and caregivers in the United States, Australia, and United Kingdom. ANALYTICAL APPROACH: Participants identified, ranked, and discussed outcomes that were important during the stages of CKD before kidney replacement therapy. For each outcome, we calculated a mean importance score (scale, 0-1). Qualitative data were analyzed using thematic analysis. RESULTS: 67 (54 patients, 13 caregivers) participated in 10 groups and identified 36 outcomes. The 5 top-ranked outcomes for patients were kidney function (importance score, 0.42), end-stage kidney disease (0.29), fatigue (0.26), mortality (0.25), and life participation (0.20); and for caregivers, the top 5 outcomes were life participation (importance score, 0.38), kidney function (0.37), mortality (0.23), fatigue (0.21), and anxiety (0.20). Blood pressure, cognition, and depression were consistently ranked in the top 10 outcomes across role (patient/caregiver), country, and treatment stage. Five themes were identified: re-evaluating and reframing life, intensified kidney consciousness, battling unrelenting and debilitating burdens, dreading upheaval and constraints, and taboo and unspoken concerns. LIMITATIONS: Only English-speaking participants were included. CONCLUSIONS: Patients and caregivers gave highest priority to kidney function, mortality, fatigue, life participation, anxiety, and depression. Consistent reporting of these outcomes in research may inform shared decision making based on patient and caregiver priorities in CKD.
RATIONALE & OBJECTIVE:Patients with chronic kidney disease (CKD) are at an increased risk for premature death, cardiovascular disease, and burdensome symptoms that impair quality of life. We aimed to identify patient and caregiver priorities for outcomes in CKD. STUDY DESIGN: Focus groups with nominal group technique. SETTING & PARTICIPANTS: Adult patients with CKD (all stages) and caregivers in the United States, Australia, and United Kingdom. ANALYTICAL APPROACH: Participants identified, ranked, and discussed outcomes that were important during the stages of CKD before kidney replacement therapy. For each outcome, we calculated a mean importance score (scale, 0-1). Qualitative data were analyzed using thematic analysis. RESULTS: 67 (54 patients, 13 caregivers) participated in 10 groups and identified 36 outcomes. The 5 top-ranked outcomes for patients were kidney function (importance score, 0.42), end-stage kidney disease (0.29), fatigue (0.26), mortality (0.25), and life participation (0.20); and for caregivers, the top 5 outcomes were life participation (importance score, 0.38), kidney function (0.37), mortality (0.23), fatigue (0.21), and anxiety (0.20). Blood pressure, cognition, and depression were consistently ranked in the top 10 outcomes across role (patient/caregiver), country, and treatment stage. Five themes were identified: re-evaluating and reframing life, intensified kidney consciousness, battling unrelenting and debilitating burdens, dreading upheaval and constraints, and taboo and unspoken concerns. LIMITATIONS: Only English-speaking participants were included. CONCLUSIONS:Patients and caregivers gave highest priority to kidney function, mortality, fatigue, life participation, anxiety, and depression. Consistent reporting of these outcomes in research may inform shared decision making based on patient and caregiver priorities in CKD.
Authors: Kelli Collins Damron; Robert Friedman; Lesley A Inker; Aliza Thompson; Morgan E Grams; Hrefna Guðmundsdóttir; Kerry Willis; Tom Manley; Hiddo L Heerspink; Daniel E Weiner Journal: Kidney Med Date: 2022-03-07