An international collaborative study to co-produce a patient-reported outcome measure of cardiac arrest survivorship and health-related quality of life (CASHQoL): A protocol for developing the long-form measure.
Cardiac arrest recovery
Co-production
Health-related quality of life
Measurement
Outcome assessment
Patient-reported outcomes
Survivorship
Journal
Resuscitation plus
ISSN: 2666-5204
Titre abrégé: Resusc Plus
Pays: Netherlands
ID NLM: 101774410
Informations de publication
Date de publication:
Sep 2022
Sep 2022
Historique:
received:
24
05
2022
revised:
21
07
2022
accepted:
01
08
2022
entrez:
5
9
2022
pubmed:
6
9
2022
medline:
6
9
2022
Statut:
epublish
Résumé
Current measures of health-related quality of life are neither sufficiently sensitive or specific to capture the complex and heterogenous nature of the recovery and survivorship associated with cardiac arrest. To address this critical practice gap, we plan a mixed-methods study to co-produce and evaluate a new cardiac arrest-specific patient/survivor-reported outcome measure (PROM). International guidelines have informed a two-stage, iterative, and interactive process.Stage one will establish what is important to measure following cardiac arrest. A meta-ethnography of published qualitative research and a qualitative exploration of the experiences of survivors and their key supporters will inform the development of a measurement framework. This will be supplemented by existing, extensive reviews describing concepts that have previously been measured in this population. Focus groups with survivors, key supporters, and healthcare professionals, followed by further interviews with survivors and key supporters, will inform the iterative refinement of the framework, candidate items, and PROM structure.Stage two will involve a psychometric evaluation following completion by a large cohort of survivors. Measurement theory will inform: the identification of items that best measure important outcomes; item reduction; and provide robust evidence of measurement and practical properties. An international, collaborative approach to PROM development will engage survivors, key supporters, researchers, and health professionals from study commencement. Successful co-production of the cardiac arrest survivorship and health-related quality of life (CASHQoL) measure will provide a robust, relevant, and internationally applicable measure, suitable for completion by adult survivors, and integration into research, registries, and routine care settings.Ethical approval: University of Warwick Biomedical & Scientific Research Ethics Committee (BSREC 22/20-21 granted 10/11/20).
Sections du résumé
Background
UNASSIGNED
Current measures of health-related quality of life are neither sufficiently sensitive or specific to capture the complex and heterogenous nature of the recovery and survivorship associated with cardiac arrest. To address this critical practice gap, we plan a mixed-methods study to co-produce and evaluate a new cardiac arrest-specific patient/survivor-reported outcome measure (PROM).
Methods
UNASSIGNED
International guidelines have informed a two-stage, iterative, and interactive process.Stage one will establish what is important to measure following cardiac arrest. A meta-ethnography of published qualitative research and a qualitative exploration of the experiences of survivors and their key supporters will inform the development of a measurement framework. This will be supplemented by existing, extensive reviews describing concepts that have previously been measured in this population. Focus groups with survivors, key supporters, and healthcare professionals, followed by further interviews with survivors and key supporters, will inform the iterative refinement of the framework, candidate items, and PROM structure.Stage two will involve a psychometric evaluation following completion by a large cohort of survivors. Measurement theory will inform: the identification of items that best measure important outcomes; item reduction; and provide robust evidence of measurement and practical properties.
Discussion
UNASSIGNED
An international, collaborative approach to PROM development will engage survivors, key supporters, researchers, and health professionals from study commencement. Successful co-production of the cardiac arrest survivorship and health-related quality of life (CASHQoL) measure will provide a robust, relevant, and internationally applicable measure, suitable for completion by adult survivors, and integration into research, registries, and routine care settings.Ethical approval: University of Warwick Biomedical & Scientific Research Ethics Committee (BSREC 22/20-21 granted 10/11/20).
Identifiants
pubmed: 36059385
doi: 10.1016/j.resplu.2022.100288
pii: S2666-5204(22)00088-1
pmc: PMC9437904
doi:
Types de publication
Journal Article
Langues
eng
Pagination
100288Investigateurs
Kristofer Arestedt
(K)
Theresa Aves
(T)
Janet Bray
(J)
Anne Brookes
(A)
Clifton Callaway
(C)
Maaret Castren
(M)
Marcus Eng Hock Ong
(MEH)
Katrysha Gellis
(K)
Paulien H Goossens
(PH)
Jan-Thorsten Graesner
(JT)
Angela Hartley
(A)
Rob Hoadley
(R)
Johan Israelsson
(J)
David Jeffrey
(D)
Vicky Joshi
(V)
Thomas R Keeble
(TR)
Gisela Lilja
(G)
John Long
(J)
Marco Mion
(M)
Laurie J Morrison
(LJ)
Veronique Rm Moulaert
(VR)
Diane Playford
(D)
Kelly Sawyer
(K)
Federico Semeraro
(F)
Karen Smith
(K)
Barry Williams
(B)
Jasmine Wylie
(J)
Informations de copyright
© 2022 The Authors.
Références
Circulation. 2020 Oct 20;142(16_suppl_2):S366-S468
pubmed: 33081529
Lancet. 2021 Oct 2;398(10307):1269-1278
pubmed: 34454687
Acta Psychiatr Scand. 1983 Jun;67(6):361-70
pubmed: 6880820
Circulation. 2019 Mar 5;139(10):e56-e528
pubmed: 30700139
Implement Sci. 2018 Jan 25;13(Suppl 1):2
pubmed: 29384079
Plast Reconstr Surg. 2009 Mar;123(3):98e-106e
pubmed: 19319025
Rheumatology (Oxford). 2018 Feb 1;57(2):263-272
pubmed: 28407140
J Appl Psychol. 1948 Jun;32(3):221-33
pubmed: 18867058
Circulation. 2020 Mar 24;141(12):e654-e685
pubmed: 32078390
Health Technol Assess. 2009 Feb;13(12):iii, ix-x, 1-177
pubmed: 19216837
Circulation. 2018 May 29;137(22):e783-e801
pubmed: 29700122
Resusc Plus. 2020 Dec 31;5:100055
pubmed: 34223328
J Clin Epidemiol. 2010 Jul;63(7):737-45
pubmed: 20494804
Qual Life Res. 2010 Oct;19(8):1087-96
pubmed: 20512662
Crit Care. 2020 Feb 22;24(1):61
pubmed: 32087741
Patient. 2012;5(2):79-87
pubmed: 22428752
Resuscitation. 2018 Feb;123:22-37
pubmed: 29191703
Value Health. 2005 Mar-Apr;8(2):94-104
pubmed: 15804318
Stroke. 2013 Jan;44(1):227-9
pubmed: 23138443
Br J Clin Psychol. 2007 Mar;46(Pt 1):1-18
pubmed: 17472198
Lancet Neurol. 2020 Jul;19(7):611-622
pubmed: 32562686
Value Health. 2011 Dec;14(8):967-77
pubmed: 22152165
Stroke. 1988 May;19(5):604-7
pubmed: 3363593
Resuscitation. 2021 Apr;161:220-269
pubmed: 33773827
Value Health. 2011 Dec;14(8):978-88
pubmed: 22152166
Health Qual Life Outcomes. 2014 Feb 05;12:15
pubmed: 24499454
J Patient Rep Outcomes. 2020 Jan 13;4(1):4
pubmed: 31933005
Resuscitation. 2015 Mar;88:150-7
pubmed: 25497393
Rheumatol Adv Pract. 2022 Apr 04;6(1):rkac027
pubmed: 35465627