Title An international Delphi survey helped develop consensus-based core outcome domains for trials in peritoneal dialysis
Authors Manera, Karine E.
Tong, Allison
Craig, Jonathan C.
Shen, Jenny
Jesudason, Shilpa
Cho, Yeoungjee
Sautenet, Benedicte
Teixeira-Pinto, Armando
Howell, Martin
Wang, Angela Yee-Moon
Brown, Edwina A.
Brunier, Gillian
Perl, Jeffrey
Dong, Jie
Wilkie, Martin
Mehrotra, Rajnish
Pecoits-Filho, Roberto
Naicker, Saraladevi
Dunning, Tony
Scholes-Robertson, Nicole
Johnson, David W.
Affiliation Univ Sydney, Sydney Sch Publ Hlth, Sydney, NSW, Australia
Childrens Hosp Westmead, Ctr Kidney Res, Cnr Hawkesbury Rd & Hainsworth St, Sydney, NSW 2145, Australia
Flinders Univ S Australia, Coll Med & Publ Hlth, Adelaide, SA, Australia
Univ Calif Los Angeles, Med Ctr, Los Angeles Biomed Res Inst Harbor, Div Nephrol & Hypertens, Torrance, CA 90024 USA
Royal Adelaide Hosp, Cent & Northern Adelaide Renal & Transplantat Ser, Adelaide, SA, Australia
Univ Adelaide, Adelaide, SA, Australia
Princess Alexandra Hosp, Dept Nephrol, Brisbane, Qld, Australia
Univ Queensland, Australian Kidney Trials Network, Brisbane, Qld, Australia
Univ Tours, Tours, France
Tours Hosp, Dept Nephrol Hypertens Dialysis Kidney Transplant, Tours, France
INSERM, U1246, Methods Patient Ctr Outcomes & Hlth Res, Tours, France
Univ Hong Kong, Queen Mary Hosp, Dept Med, Hong Kong, Peoples R China
Imperial Coll, Hammersmith Hosp, Renal & Transplant Ctr, London, England
Sunnybrook Hlth Sci Ctr, Toronto, ON, Canada
Univ Toronto, St Michaels Hosp, Dept Med, Div Nephrol, Toronto, ON, Canada
Peking Univ, Hosp 1, Dept Med, Renal Div, Beijing, Peoples R China
Sheffield Teaching Hosp Natl Hlth Serv Fdn Trust, Dept Nephrol, Sheffield, S Yorkshire, England
Univ Washington, Dept Med, Div Nephrol, Kidney Res Inst, Seattle, WA 98195 USA
Univ Washington, Dept Med, Div Nephrol, Harborview Med Ctr, Seattle, WA 98195 USA
Pontificia Univ Catolica Parana, Sch Med, Curitiba, Parana, Brazil
Arbor Res Collaborat Hlth, Ann Arbor, MI USA
Univ Witwatersrand, Fac Hlth Sci, Sch Clin Med, Dept Internal Med, Johannesburg, South Africa
South Bank Tech & Further Educ, Brisbane, Qld, Australia
Translat Res Inst, Brisbane, Qld, Australia
Univ Queensland, Princess Alexandra Hosp, Ctr Kidney Dis Res, Brisbane, Qld, Australia
Keywords core outcome sets
kidney disease
outcomes
patient-centered care
peritoneal dialysis
trials
Issue Date 2019
Publisher KIDNEY INTERNATIONAL
Abstract Shared decision-making about clinical care options in end-stage kidney disease is limited by inconsistencies in the reporting of outcomes and the omission of patient-important outcomes in trials. Here we generated a consensus-based prioritized list of outcomes to be reported during trials in peritoneal dialysis (PD). In an international, online, three-round Delphi survey, patients/caregivers and health professionals rated the importance of outcomes using a 9-point Likert scale (with 7-9 indicating critical importance) and provided comments. Using a Best-Worst Scale (BWS), the relative importance of outcomes was estimated. Comments were analyzed thematically. In total, 873 participants (207 patients/caregivers and 666 health professionals) from 68 countries completed round one, 629 completed round two and 530 completed round three. The top outcomes were PDrelated infection, membrane function, peritoneal dialysis failure, cardiovascular disease, death, catheter complications, and the ability to do usual activities. Compared with health professionals, patients/caregivers gave higher priority to six outcomes: blood pressure (mean difference, 0.4), fatigue (0.3), membrane function (0.3), impact on family/friends (0.1), peritoneal thickening (0.1) and usual activities (0.1). Four themes were identified that underpinned the reasons for ratings: contributing to treatment longevity, preserving quality of life, escalating morbidity, and irrelevant and futile information and treatment. Patients/caregivers and health professionals gave highest priority to clinical outcomes. In contrast to health professionals, patients/caregivers gave higher priority to lifestyle-related outcomes including the impact on family/friends and usual activities. Thus, prioritization will inform a core outcome set to improve the consistency and relevance of outcomes for trials in PD.
URI http://hdl.handle.net/20.500.11897/545591
ISSN 0085-2538
DOI 10.1016/j.kint.2019.03.015
Indexed SCI(E)
Appears in Collections: 第一医院

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