Preliminary development of recommendations for the inclusion of patient-reported outcome measures in clinical quality registries.

Australia Delphi Technique Humans Patient Reported Outcome Measures Quality of Life Registries Surveys and Questionnaires
Delphi Outcomes PROMs Quality of life Recommendations Registry

Journal

BMC health services research
ISSN: 1472-6963
Titre abrégé: BMC Health Serv Res
Pays: England
ID NLM: 101088677

Informations de publication

Date de publication:
01 Mar 2022
Historique:
received: 23 09 2021
accepted: 14 02 2022
entrez: 2 3 2022
pubmed: 3 3 2022
medline: 4 3 2022
Statut: epublish

Résumé

Clinical quality registries (CQRs) monitor compliance against optimal practice and provide feedback to the clinical community and wider stakeholder groups. Despite a number of CQRs having incorporated the patient perspective to support the evaluation of healthcare delivery, no recommendations for inclusion of patient-reported outcome measures (PROMs) in CQRs exist. The aim of this study was to develop a core set of recommendations for PROMs inclusion of in CQRs. An online two-round Delphi survey was performed among CQR data custodians, quality of life researchers, biostatisticians and clinicians largely recruited in Australia. A list of statements for the recommendations was identified from a literature and survey of the Australian registries conducted in 2019. The statements were grouped into the following domains: rationale, setting, ethics, instrument, administration, data management, statistical methods, and feedback and reporting. Eighteen experts were invited to participate, 11 agreed to undertake the first online survey (round 1). Of these, nine experts completed the online survey for round 2. From 117 statements presented to the Delphi panel in round 1, a total of 72 recommendations (55 from round 1 and 17 from round 2) with median importance (MI) ≥ 7 and disagreement index (DI) < 1 were proposed for inclusion into the final draft set and were reviewed by the project team. Recommendations were refined for clarity and to read as stand-alone statements. Ten overlapped conceptually and, therefore, were merged to reduce repetition. The final 62 recommendations were sent for review to the panel members for their feedback, which was incorporated into the final set. This is the first study to develop preliminary recommendations for PROMs inclusion in CQRs. Recommendations for PROMs implementation are critically important for registries to assure meaningful PROMs data capture, use, interpretation, and reporting to improve health outcomes and healthcare value.

Sections du résumé

BACKGROUND BACKGROUND
Clinical quality registries (CQRs) monitor compliance against optimal practice and provide feedback to the clinical community and wider stakeholder groups. Despite a number of CQRs having incorporated the patient perspective to support the evaluation of healthcare delivery, no recommendations for inclusion of patient-reported outcome measures (PROMs) in CQRs exist. The aim of this study was to develop a core set of recommendations for PROMs inclusion of in CQRs.
METHOD METHODS
An online two-round Delphi survey was performed among CQR data custodians, quality of life researchers, biostatisticians and clinicians largely recruited in Australia. A list of statements for the recommendations was identified from a literature and survey of the Australian registries conducted in 2019. The statements were grouped into the following domains: rationale, setting, ethics, instrument, administration, data management, statistical methods, and feedback and reporting. Eighteen experts were invited to participate, 11 agreed to undertake the first online survey (round 1). Of these, nine experts completed the online survey for round 2.
RESULTS RESULTS
From 117 statements presented to the Delphi panel in round 1, a total of 72 recommendations (55 from round 1 and 17 from round 2) with median importance (MI) ≥ 7 and disagreement index (DI) < 1 were proposed for inclusion into the final draft set and were reviewed by the project team. Recommendations were refined for clarity and to read as stand-alone statements. Ten overlapped conceptually and, therefore, were merged to reduce repetition. The final 62 recommendations were sent for review to the panel members for their feedback, which was incorporated into the final set.
CONCLUSION CONCLUSIONS
This is the first study to develop preliminary recommendations for PROMs inclusion in CQRs. Recommendations for PROMs implementation are critically important for registries to assure meaningful PROMs data capture, use, interpretation, and reporting to improve health outcomes and healthcare value.

Identifiants

DOI: 10.1186/s12913-022-07657-4 PMID: 35232454 PMC: PMC8886855
pubmed: 35232454
doi: 10.1186/s12913-022-07657-4
pii: 10.1186/s12913-022-07657-4
pmc: PMC8886855
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

276

Informations de copyright

© 2022. The Author(s).

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Auteurs

Rasa Ruseckaite (R)

Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Victoria, Australia. rasa.ruseckaite@monash.edu.

Ashika D Maharaj (AD)

Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.

Joanne Dean (J)

Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.

Karolina Krysinska (K)

Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.

Ilana N Ackerman (IN)

Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.

Angela L Brennan (AL)

Centre of Cardiovascular Research and Education in Therapeutics, Monash University, Melbourne, Victoria, 3004, Australia.

Ljoudmila Busija (L)

Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.

Helen Carter (H)

Australian Stroke Clinical Registry, The Florey Institute of Neuroscience & Mental Health, Melbourne, Victoria, Australia.

Arul Earnest (A)

Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.

Christopher B Forrest (CB)

Children's Hospital of Philadelphia, Philadelphia, PA, USA.

Ian A Harris (IA)

Whitlam Orthopaedic Research Centre, Ingham Institute for Applied Medical Research, Sydney, Australia.
South Western Sydney Clinical School, University of New South Wales, Sydney, New South Wales, Australia.

Janet Sansoni (J)

Centre for Health Service Development, Australian Health Services Research Institute, University of Wollongong, Wollongong, New South Wales, Australia.

Susannah Ahern (S)

Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, Victoria, Australia.

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Classifications MeSH

questionsmedicales.fr › Régions géographiques › Océanie › Australasie › Australie › Preliminary development of recommendations for...
questionsmedicales.fr › Sciences de l'information › Analyse des systèmes › Méthode Delphi › Preliminary development of recommendations for...
questionsmedicales.fr › Eucaryotes › Animaux › Chordés › Vertébrés › Mammifères › Eutheria › Primates › Haplorhini › Catarrhini › Hominidae › Humains › Preliminary development of recommendations for...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Collecte de données › Enquêtes et questionnaires › Enquêtes sur les soins de santé › Mesures des résultats rapportés par les patients › Preliminary development of recommendations for...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Mesures épidémiologiques › Démographie › État de santé › Qualité de vie › Preliminary development of recommendations for...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Collecte de données › Enregistrements › Preliminary development of recommendations for...
questionsmedicales.fr › Environnement et santé publique › Santé publique › Méthodes épidémiologiques › Collecte de données › Enquêtes et questionnaires › Preliminary development of recommendations for...