TY - JOUR
T1 - Patient and caregiver priorities for outcomes in peritoneal dialysis
T2 - Multinational Nominal Group Technique Study
AU - Manera, Karine E.
AU - Johnson, David W.
AU - Craig, Jonathan C.
AU - Shen, Jenny I.
AU - Ruiz, Lorena
AU - Wang, Angela Yee Moon
AU - Yip, Terence
AU - Fung, Samuel K.S.
AU - Tong, Matthew
AU - Lee, Achilles
AU - Cho, Yeoungjee
AU - Viecelli, Andrea K.
AU - Sautenet, Benedicte
AU - Teixeira-Pinto, Armando
AU - Brown, Edwina Anne
AU - Brunier, Gillian
AU - Dong, Jie
AU - Dunning, Tony
AU - Mehrotra, Rajnish
AU - Naicker, Saraladevi
AU - Pecoits-Filho, Roberto
AU - Perl, Jeffrey
AU - Wilkie, Martin
AU - Tong, Allison
PY - 2019/1/7
Y1 - 2019/1/7
N2 - Background and objectives The absence of accepted patient-centered outcomes in research can limit shared decision-making in peritoneal dialysis (PD), particularly because PD-related treatments can be associated with mortality, technique failure, and complications that can impair quality of life. We aimed to identify patient and caregiver priorities for outcomes in PD, and to describe the reasons for their choices. Design, setting, participants, & measurements Patients on PD and their caregivers were purposively sampled from nine dialysis units across Australia, the United States, and Hong Kong. Using nominal group technique, participants identified and ranked outcomes, and discussed the reasons for their choices. An importance score (scale 0–1) was calculated for each outcome. Qualitative data were analyzed thematically. Results Across 14 groups, 126 participants (81 patients, 45 caregivers), aged 18–84 (mean 54, SD 15) years, identified 56 outcomes. The ten highest ranked outcomes were PD infection (importance score, 0.27), mortality (0.25), fatigue (0.25), flexibility with time (0.18), BP (0.17), PD failure (0.16), ability to travel (0.15), sleep (0.14), ability to work (0.14), and effect on family (0.12). Mortality was ranked first in Australia, second in Hong Kong, and 15th in the United States. The five themes were serious and cascading consequences on health, current and impending relevance, maintaining role and social functioning, requiring constant vigilance, and beyond control and responsibility. Conclusions For patients on PD and their caregivers, PD-related infection, mortality, and fatigue were of highest priority, and were focused on health, maintaining lifestyle, and self-management. Reporting these patient-centered outcomes may enhance the relevance of research to inform shared decision-making.
AB - Background and objectives The absence of accepted patient-centered outcomes in research can limit shared decision-making in peritoneal dialysis (PD), particularly because PD-related treatments can be associated with mortality, technique failure, and complications that can impair quality of life. We aimed to identify patient and caregiver priorities for outcomes in PD, and to describe the reasons for their choices. Design, setting, participants, & measurements Patients on PD and their caregivers were purposively sampled from nine dialysis units across Australia, the United States, and Hong Kong. Using nominal group technique, participants identified and ranked outcomes, and discussed the reasons for their choices. An importance score (scale 0–1) was calculated for each outcome. Qualitative data were analyzed thematically. Results Across 14 groups, 126 participants (81 patients, 45 caregivers), aged 18–84 (mean 54, SD 15) years, identified 56 outcomes. The ten highest ranked outcomes were PD infection (importance score, 0.27), mortality (0.25), fatigue (0.25), flexibility with time (0.18), BP (0.17), PD failure (0.16), ability to travel (0.15), sleep (0.14), ability to work (0.14), and effect on family (0.12). Mortality was ranked first in Australia, second in Hong Kong, and 15th in the United States. The five themes were serious and cascading consequences on health, current and impending relevance, maintaining role and social functioning, requiring constant vigilance, and beyond control and responsibility. Conclusions For patients on PD and their caregivers, PD-related infection, mortality, and fatigue were of highest priority, and were focused on health, maintaining lifestyle, and self-management. Reporting these patient-centered outcomes may enhance the relevance of research to inform shared decision-making.
KW - outcomes
KW - caregivers
KW - blood pressure
KW - quality of life
KW - self-management
KW - decision making
KW - patient participation
KW - peritoneal dialysis
KW - wakefulness
KW - life style
UR - http://www.scopus.com/inward/record.url?scp=85059928852&partnerID=8YFLogxK
UR - http://purl.org/au-research/grants/nhmrc/1151343
UR - http://purl.org/au-research/grants/nhmrc/1106716
U2 - 10.2215/CJN.05380518
DO - 10.2215/CJN.05380518
M3 - Article
C2 - 30573659
AN - SCOPUS:85059928852
VL - 14
SP - 74
EP - 83
JO - Clinical Journal of the American Society of Nephrology
JF - Clinical Journal of the American Society of Nephrology
SN - 1555-905X
IS - 1
ER -