An international Delphi survey helped develop consensus-based core outcome domains for trials in peritoneal dialysis

Karine E. Manera, Allison Tong, Jonathan C. Craig, Jenny Shen, Shilpanjali Jesudason, Yeoungjee Cho, Benedicte Sautenet, Armando Teixeira-Pinto, Martin Howell, Angela Yee Moon Wang, Edwina A. Brown, Gillian Brunier, Jeffrey Perl, Jie Dong, Martin Wilkie, Rajnish Mehrotra, Roberto Pecoits-Filho, Saraladevi Naicker, Tony Dunning, Nicole Scholes-Robertson & 1 others David W. Johnson

Research output: Contribution to journalArticle

1 Citation (Scopus)

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 PD-related 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.

LanguageEnglish
Pages699-710
Number of pages12
JournalKidney International
Volume96
Issue number3
DOIs
Publication statusPublished - 1 Sep 2019

Keywords

  • core outcome sets
  • kidney disease
  • outcomes
  • patient-centered care
  • peritoneal dialysis
  • trials

ASJC Scopus subject areas

  • Nephrology

Cite this

Manera, Karine E. ; Tong, Allison ; Craig, Jonathan C. ; Shen, Jenny ; Jesudason, Shilpanjali ; 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. / An international Delphi survey helped develop consensus-based core outcome domains for trials in peritoneal dialysis. In: Kidney International. 2019 ; Vol. 96, No. 3. pp. 699-710.
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Manera, KE, Tong, A, Craig, JC, Shen, J, Jesudason, S, Cho, Y, Sautenet, B, Teixeira-Pinto, A, Howell, M, Wang, AYM, Brown, EA, Brunier, G, Perl, J, Dong, J, Wilkie, M, Mehrotra, R, Pecoits-Filho, R, Naicker, S, Dunning, T, Scholes-Robertson, N & Johnson, DW 2019, 'An international Delphi survey helped develop consensus-based core outcome domains for trials in peritoneal dialysis', Kidney International, vol. 96, no. 3, pp. 699-710. https://doi.org/10.1016/j.kint.2019.03.015

An international Delphi survey helped develop consensus-based core outcome domains for trials in peritoneal dialysis. / Manera, Karine E.; Tong, Allison; Craig, Jonathan C.; Shen, Jenny; Jesudason, Shilpanjali; 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.

In: Kidney International, Vol. 96, No. 3, 01.09.2019, p. 699-710.

Research output: Contribution to journalArticle

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