Establishing a core outcome measure for life participation in patients receiving peritoneal dialysis: A Standardised Outcomes in Nephrology-Peritoneal Dialysis consensus workshop report.

Humans Nephrology Peritoneal Dialysis Consensus Outcome Assessment, Health Care Renal Dialysis / adverse effects
Core outcome measure life participation patient-reported outcome measures peritoneal dialysis quality of life

Journal

Peritoneal dialysis international : journal of the International Society for Peritoneal Dialysis
ISSN: 1718-4304
Titre abrégé: Perit Dial Int
Pays: United States
ID NLM: 8904033

Informations de publication

Date de publication:
11 2022
Historique:
pubmed: 12 5 2022
medline: 9 11 2022
entrez: 11 5 2022
Statut: ppublish

Résumé

Life participation is an outcome of critical importance to patients receiving peritoneal dialysis (PD). However, there is no widely accepted or validated tool for measuring life participation in patients receiving PD. Online consensus workshop to identify the essential characteristics of life participation as a core outcome, with the goal of establishing a patient-reported outcome measure for use in all trials in patients receiving PD. Thematic analysis of transcripts was performed. Fifty-six participants, including 17 patients and caregivers, from 15 countries convened via online videoconference. Four themes were identified: reconfiguring expectations of daily living (accepting day-to-day fluctuation as the norm, shifting thresholds of acceptability, preserving gains in flexibility and freedom), ensuring broad applicability and interpretability (establishing cross-cultural relevance, incorporating valued activities, distinguishing unmodifiable barriers to life participation), capturing transitions between modalities and how they affect life participation (responsive to trajectory towards stable, reflecting changes with dialysis transitions) and maximising feasibility of implementation (reducing completion burden, administrable with ease and flexibility). There is a need for a validated, generalisable outcome measure for life participation in patients receiving PD. Feasibility, including length of time to complete and flexible mode of delivery, are important to allow implementation in all trials that include patients receiving PD.

Sections du résumé

BACKGROUND
Life participation is an outcome of critical importance to patients receiving peritoneal dialysis (PD). However, there is no widely accepted or validated tool for measuring life participation in patients receiving PD.
METHODS
Online consensus workshop to identify the essential characteristics of life participation as a core outcome, with the goal of establishing a patient-reported outcome measure for use in all trials in patients receiving PD. Thematic analysis of transcripts was performed.
RESULTS
Fifty-six participants, including 17 patients and caregivers, from 15 countries convened via online videoconference. Four themes were identified: reconfiguring expectations of daily living (accepting day-to-day fluctuation as the norm, shifting thresholds of acceptability, preserving gains in flexibility and freedom), ensuring broad applicability and interpretability (establishing cross-cultural relevance, incorporating valued activities, distinguishing unmodifiable barriers to life participation), capturing transitions between modalities and how they affect life participation (responsive to trajectory towards stable, reflecting changes with dialysis transitions) and maximising feasibility of implementation (reducing completion burden, administrable with ease and flexibility).
CONCLUSIONS
There is a need for a validated, generalisable outcome measure for life participation in patients receiving PD. Feasibility, including length of time to complete and flexible mode of delivery, are important to allow implementation in all trials that include patients receiving PD.

Identifiants

DOI: 10.1177/08968608221096560 PMID: 35538693
pubmed: 35538693
doi: 10.1177/08968608221096560
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

562-570

Commentaires et corrections

Type : CommentIn

Auteurs

Melissa S Cheetham (MS)

Department of Nephrology, Sunshine Coast University Hospital, Birtinya, Australia.
Sunshine Coast Health Institute, Birtinya, Australia.
Faculty of Medicine, University of Queensland, Brisbane, Australia.
ORCID: 0000-0001-5776-6160

Martin Wilkie (M)

Department of Nephrology, Sheffield Teaching Hospitals NHS Foundation Trust, UK.

Fiona Loud (F)

Kidney Care UK, London, UK.

Karine E Manera (KE)

Sydney School of Public Health, The University of Sydney, New South Wales, Australia.
Centre for Kidney Research, Children's Hospital at Westmead, New South Wales, Australia.

Angela Ju (A)

Sydney School of Public Health, The University of Sydney, New South Wales, Australia.
Centre for Kidney Research, Children's Hospital at Westmead, New South Wales, Australia.

Ana Figueiredo (A)

School of Health Sciences and Life, Nursing School, Pontificia Universidade Católica do Rio Grande do Sul, Porto Alegre, Brazil.

Janine Farragher (J)

Department of Occupational Science and Occupational Therapy, University of Toronto, Ontario, Canada.

Helen Hurst (H)

Manchester Academic Health Science Centre, Manchester University NHS Foundation Trust, University of Manchester, UK.

Sarbjit V Jassal (SV)

Division of Nephrology, Department of Medicine, University Health Network, University of Toronto, Ontario, Canada.

Rajnish Mehrotra (R)

Division of Nephrology/Department of Medicine, University of Washington, Seattle, WA, USA.

Rachael L Morton (RL)

NHMRC Clinical Trials Centre, University of Sydney, New South Wales, Australia.

Daniel Schwartz (D)

Division of Nephrology, Department of Medicine, University of British Columbia, Vancouver, British Columbia, Canada.

Jenny I Shen (JI)

Division of Nephrology and Hypertension, The Lundquist Institute at Harbor-UCLA Medical Center, Torrance, CA, USA.
ORCID: 0000-0002-2993-403X

Rachael Walker (R)

School of Nursing, Eastern Institute of Technology, Hawke's Bay, New Zealand.
ORCID: 0000-0001-5163-4351

Yeoungjee Cho (Y)

Faculty of Medicine, University of Queensland, Brisbane, Australia.
Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia.
Australasian Kidney Trials Network, Centre for Health Services Research, University of Queensland, Brisbane, Queensland, Australia.
Translational Research Institute, Brisbane, Australia.
ORCID: 0000-0002-3502-9837

David W Johnson (DW)

Faculty of Medicine, University of Queensland, Brisbane, Australia.
Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia.
Australasian Kidney Trials Network, Centre for Health Services Research, University of Queensland, Brisbane, Queensland, Australia.
Translational Research Institute, Brisbane, Australia.
ORCID: 0000-0001-5491-3460

Jonathan C Craig (JC)

College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia.

Samaya Anumudu (S)

Selzman Institute of Kidney Health, Section of Nephrology, Department of Medicine, Baylor College of Medicine, Houston, TX, USA.

Amanda Baumgart (A)

Sydney School of Public Health, The University of Sydney, New South Wales, Australia.
Centre for Kidney Research, Children's Hospital at Westmead, New South Wales, Australia.

Andrea Matus Gonzalez (AM)

Sydney School of Public Health, The University of Sydney, New South Wales, Australia.
Centre for Kidney Research, Children's Hospital at Westmead, New South Wales, Australia.

Nicole Scholes-Robertson (N)

Sydney School of Public Health, The University of Sydney, New South Wales, Australia.
Centre for Kidney Research, Children's Hospital at Westmead, New South Wales, Australia.

Andrea K Viecelli (AK)

Faculty of Medicine, University of Queensland, Brisbane, Australia.
Department of Nephrology, Princess Alexandra Hospital, Brisbane, Queensland, Australia.
Australasian Kidney Trials Network, Centre for Health Services Research, University of Queensland, Brisbane, Queensland, Australia.
Translational Research Institute, Brisbane, Australia.

Allison Tong (A)

Sydney School of Public Health, The University of Sydney, New South Wales, Australia.
Centre for Kidney Research, Children's Hospital at Westmead, New South Wales, Australia.

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Classifications MeSH

questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › Establishing a core outcome measure for life...
questionsmedicales.fr › Professions de santé › Médecine › Médecine interne › Néphrologie › Establishing a core outcome measure for life...
questionsmedicales.fr › Thérapeutique › Détoxication par sorption › Dialyse rénale › Dialyse péritonéale › Establishing a core outcome measure for life...
questionsmedicales.fr › Phénomènes psychologiques › Processus mentaux › Pensée (activité mentale) › Prise de décision › Consensus › Establishing a core outcome measure for life...
questionsmedicales.fr › Qualité, accès, évaluation des soins de santé › Qualité des soins de santé › Mécanismes d'évaluation des soins de santé › Évaluation des résultats et des processus en soins de santé › Évaluation de résultat (soins) › Establishing a core outcome measure for life...
questionsmedicales.fr › Thérapeutique › Détoxication par sorption › Dialyse rénale › Establishing a core outcome measure for life...