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Contrasting Approaches in the Implementation of GRADE Methodology in Guidelines for Haemophilia and Von Willebrand Disease.

Authors :
Skinner MW
Albisetti M
Ardila J
Astermark J
Blatny J
Carcao M
Chowdary P
Connell NT
Crato M
Dargaud Y
d'Oiron R
Dunn AL
Escobar MA
Escuriola-Ettingshausen C
Gouider E
Harroche A
Hermans C
Jimenez-Yuste V
Kaczmarek R
Kenet G
Khoo L
Klamroth R
Langer F
Lillicrap D
Mahlangu J
Male C
Matsushita T
Meunier S
Miesbach W
Nolan B
Oldenburg J
O'Mahony B
Ozelo M
Pierce GF
Ramos G
Recht M
Romero-Lux O
Rotellini D
Santoro RC
Singleton TC
Srivastava A
Susen S
Talks K
Tran H
Valentino LA
Windyga J
Yang R
Mancuso ME
Source :
Haemophilia : the official journal of the World Federation of Hemophilia [Haemophilia] 2024 Dec 09. Date of Electronic Publication: 2024 Dec 09.
Publication Year :
2024
Publisher :
Ahead of Print

Abstract

Introduction: The 2024 ISTH clinical practice guideline (CPG) for treatment of congenital haemophilia, the NBDF-McMaster Guideline on Care Models for Haemophilia Management, and ASH ISTH NBDF WFH guidelines on the diagnosis and management of VWD all utilised GRADE methodology.<br />Aim: Discuss missed opportunities and the methodological approach of the ISTH Guideline in contrast to how GRADE was previously applied in rare diseases.<br />Methods: Critically analyse the methodology of each guideline along with best practices in the use of GRADE. Where applicable, the WFH Guidelines for the Management of Haemophilia were analysed.<br />Results: Important differentiating features in applying GRADE were identified. Where a strong evidence base is lacking, data other than those from randomized controlled trials, which may not always be justified, need to be considered, including incorporation of outcomes important to people living with the disease. Justification and stakeholder input to prioritize questions requiring a new guideline, panel composition with necessary patient participation and content expertise were also found to be significant differentiating features.<br />Conclusion: The puristic approach taken in the ISTH Guideline development process, without consideration of accepted adaptations to GRADE implementation, created a missed opportunity for progressing haemophilia care, leading to guideline recommendations that have been widely deemed invalid and obsolete by expert healthcare professionals and by those living with the condition, the very people who are expected to implement or bear the impact of the recommendations. Lessons learnt from this comparative analysis should guide future guideline development and encourage collaboration to further advance haemophilia.<br /> (© 2024 The Author(s). Haemophilia published by John Wiley & Sons Ltd.)

Details

Language :
English
ISSN :
1365-2516
Database :
MEDLINE
Journal :
Haemophilia : the official journal of the World Federation of Hemophilia
Publication Type :
Academic Journal
Accession number :
39648854
Full Text :
https://doi.org/10.1111/hae.15136