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Health and Quality of Life Outcomes
Published in: Health and Quality of Life Outcomes 1/2020

Open Access 01-12-2020 | Research

Development and use of health outcome descriptors: a guideline development case study

Authors: Tejan Baldeh, Zuleika Saz-Parkinson, Paola Muti, Nancy Santesso, Gian Paolo Morgano, Wojtek Wiercioch, Robby Nieuwlaat, Axel Gräwingholt, Mireille Broeders, Stephen Duffy, Solveig Hofvind, Lennarth Nystrom, Lydia Ioannidou-Mouzaka, Sue Warman, Helen McGarrigle, Susan Knox, Patricia Fitzpatrick, Paolo Giorgi Rossi, Cecily Quinn, Bettina Borisch, Annette Lebeau, Chris de Wolf, Miranda Langendam, Thomas Piggott, Livia Giordano, Cary van Landsveld-Verhoeven, Jacques Bernier, Peter Rabe, Holger J. Schünemann

Published in: Health and Quality of Life Outcomes | Issue 1/2020

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Abstract

Background

During healthcare guideline development, panel members often have implicit, different definitions of health outcomes that can lead to misunderstandings about how important these outcomes are and how to balance benefits and harms. McMaster GRADE Centre researchers developed ‘health outcome descriptors’ for standardizing descriptions of health outcomes and overcoming these problems to support the European Commission Initiative on Breast Cancer (ECIBC) Guideline Development Group (GDG). We aimed to determine which aspects of the development, content, and use of health outcome descriptors were valuable to guideline developers.

Methods

We developed 24 health outcome descriptors related to breast cancer screening and diagnosis for the European Commission Breast Guideline Development Group (GDG). Eighteen GDG members provided feedback in written format or in interviews. We then evaluated the process and conducted two health utility rating surveys.

Results

Feedback from GDG members revealed that health outcome descriptors are probably useful for developing recommendations and improving transparency of guideline methods. Time commitment, methodology training, and need for multidisciplinary expertise throughout development were considered important determinants of the process. Comparison of the two health utility surveys showed a decrease in standard deviation in the second survey across 21 (88%) of the outcomes.

Conclusions

Health outcome descriptors are feasible and should be developed prior to the outcome prioritization step in the guideline development process. Guideline developers should involve a subgroup of multidisciplinary experts in all stages of development and ensure all guideline panel members are trained in guideline methodology that includes understanding the importance of defining and understanding the outcomes of interest.
Appendix
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Metadata
Title
Development and use of health outcome descriptors: a guideline development case study
Authors
Tejan Baldeh
Zuleika Saz-Parkinson
Paola Muti
Nancy Santesso
Gian Paolo Morgano
Wojtek Wiercioch
Robby Nieuwlaat
Axel Gräwingholt
Mireille Broeders
Stephen Duffy
Solveig Hofvind
Lennarth Nystrom
Lydia Ioannidou-Mouzaka
Sue Warman
Helen McGarrigle
Susan Knox
Patricia Fitzpatrick
Paolo Giorgi Rossi
Cecily Quinn
Bettina Borisch
Annette Lebeau
Chris de Wolf
Miranda Langendam
Thomas Piggott
Livia Giordano
Cary van Landsveld-Verhoeven
Jacques Bernier
Peter Rabe
Holger J. Schünemann
Publication date
01-12-2020
Publisher
BioMed Central
Published in
Health and Quality of Life Outcomes / Issue 1/2020
Electronic ISSN: 1477-7525
DOI
https://doi.org/10.1186/s12955-020-01338-8

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