TY - JOUR
T1 - Patient and Caregiver Priorities for Outcomes in CKD
T2 - A Multinational Nominal Group Technique Study
AU - González, Andrea Matus
AU - Gutman, Talia
AU - Lopez-Vargas, Pamela
AU - Anumudu, Samaya
AU - Arce, Cristina M.
AU - Craig, Jonathan C.
AU - Dunn, Louese
AU - Eckardt, Kai Uwe
AU - Harris, Tess
AU - Levey, Andrew S.
AU - Lightstone, Liz
AU - Scholes-Robertson, Nicole
AU - Shen, Jenny I.
AU - Teixeira-Pinto, Armando
AU - Wheeler, David C.
AU - White, Dave
AU - Wilkie, Martin
AU - Jadoul, Michel
AU - Winkelmayer, Wolfgang C.
AU - Tong, Allison
N1 - Funding Information:
Dr Tong is supported by a National Health and Medical Research Council (NHMRC) Fellowship (ID1106716). The study was funded by the NHMRC Program Grant Better Evidence and Translation in Chronic Kidney Disease (BEAT-CKD) (ID1092957). The funder had no role in the study design; data collection, analysis, or reporting; or the decision to submit for publication.
Funding Information:
Andrea Matus Gonz?lez, BSc(Nutr), Talia Gutman, MPH, Pamela Lopez-Vargas, PhD, Samaya Anumudu, MD, Cristina M. Arce, MD, Jonathan C. Craig, PhD, Louese Dunn, MPH, Kai-Uwe Eckardt, MD, Tess Harris, MA, Andrew S. Levey, MD, Liz Lightstone, PhD, Nicole Scholes-Robertson, BAppSc, Jenny I. Shen, MD, Armando Teixeira-Pinto, PhD, David C. Wheeler, MD, Dave White, BS, Martin Wilkie, MD, Michel Jadoul, MD, Wolfgang C. Winkelmayer, MD, ScD, and Allison Tong, PhD. Research idea and study design: all authors; data acquisition: AMG, TG, PL-V, LD, NS-R; data analysis/interpretation: AMG, TG, PL-V, SA, CA, JCC, LD, KE, TH, ASL, LL, NS-R, JIS, AT-P, DCW, DW, MW, MJ, WCW; supervision or mentorship: AT, PL-V, JCC, AT-P. Each author contributed important intellectual content during manuscript drafting or revision and agrees to be personally accountable for the individual's own contributions and to ensure that questions pertaining to the accuracy or integrity of any portion of the work, even one in which the author was not directly involved, are appropriately investigated and resolved, including with documentation in the literature if appropriate. Dr Tong is supported by a National Health and Medical Research Council (NHMRC) Fellowship (ID1106716). The study was funded by the NHMRC Program Grant Better Evidence and Translation in Chronic Kidney Disease (BEAT-CKD) (ID1092957). The funder had no role in the study design; data collection, analysis, or reporting; or the decision to submit for publication. The authors declare that they have no relevant financial interests. We thank the patients and family members who gave their time to participate in the study. Received December 20, 2019. Evaluated by 3 external peer reviewers, with direct editorial input from an Associate Editor, who served as Acting Editor-in-Chief. Accepted in revised form March 21, 2020. The involvement of an Acting Editor-in-Chief was to comply with AJKD's procedures for potential conflicts of interest for editors, described in the Information for Authors & Journal Policies.
Publisher Copyright:
© 2020
PY - 2020/11
Y1 - 2020/11
N2 - 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.
AB - 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.
KW - Chronic kidney disease (CKD)
KW - anxiety
KW - caregivers
KW - core outcome sets
KW - end-stage renal disease (ESRD)
KW - fatigue
KW - life participation
KW - mortality
KW - nephrology trial design
KW - patient-centered care
KW - patient-reported outcomes
KW - patients
KW - qualitative research
KW - renal function
KW - research objectives
KW - shared decision-making
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U2 - 10.1053/j.ajkd.2020.03.022
DO - 10.1053/j.ajkd.2020.03.022
M3 - Article
C2 - 32492463
AN - SCOPUS:85089356272
VL - 76
SP - 679
EP - 689
JO - American Journal of Kidney Diseases
JF - American Journal of Kidney Diseases
SN - 0272-6386
IS - 5
ER -