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
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 - anxiety
KW - caregivers
KW - Chronic kidney disease (CKD)
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
UR - http://www.scopus.com/inward/record.url?scp=85089356272&partnerID=8YFLogxK
UR - http://purl.org/au-research/grants/NHMRC/1106716
UR - http://purl.org/au-research/grants/NHMRC/1092957
U2 - 10.1053/j.ajkd.2020.03.022
DO - 10.1053/j.ajkd.2020.03.022
M3 - Article
C2 - 32492463
AN - SCOPUS:85089356272
SN - 0272-6386
VL - 76
SP - 679
EP - 689
JO - American Journal of Kidney Diseases
JF - American Journal of Kidney Diseases
IS - 5
ER -