Cross-cultural adaptation and validation of Haem-A-QoL in Côte d'Ivoire.
Haem-A-QoL
developing country
haemophilia
health-related quality of life
psychometric testing
Journal
Haemophilia : the official journal of the World Federation of Hemophilia
ISSN: 1365-2516
Titre abrégé: Haemophilia
Pays: England
ID NLM: 9442916
Informations de publication
Date de publication:
May 2020
May 2020
Historique:
received:
20
12
2019
revised:
10
03
2020
accepted:
16
03
2020
pubmed:
13
5
2020
medline:
15
12
2020
entrez:
13
5
2020
Statut:
ppublish
Résumé
Health-related quality (HRQoL) evaluations are considered essential outcomes in the assessment of people with haemophilia. In developing countries, reliable HRQoL data are even more critical whilst enabling government agencies to develop national haemophilia care programmes. However, validated tools are not yet available in sub-Saharan African countries. This study sought to perform a cultural adaptation and validation of the Haemophilia Quality of Life Questionnaire for Adults (Haem-A-QoL) in Côte d'Ivoire. The process comprised several steps, such as linguistic adaptation, cognitive debriefing interviews with adult haemophilia patients and psychometric testing, including reliability (internal consistency, test-retest reliability) and validity assessments (convergent with EQ-5D-5L, criterion with HJHS 2.1, known-groups). The final Ivoirian Haem-A-QoL version was obtained in December 2017 following linguistic adaptation and cognitive debriefings with six participants. The validation process included 25 patients, mainly haemophilia A patients (88%) with severe forms (80%). All participants received on-demand treatment, with joint impairment observed in 92%. Internal consistency and test-retest reliability of the Ivoirian Haem-A-QoL were very good. A Pearson correlation analysis revealed a moderate negative correlation between EQ-VAS and total Haem-A-QoL scores and a moderate positive correlation between HJHS 2.1 and total Haem-A-QoL scores. A cross-culturally adapted and validated Haem-A-QoL version in Côte d'Ivoire is now available, enabling measurement of intervention outcomes in the targeted population and Ivorian participation to multisite international trials. However, further work is needed to ensure optimal understanding of HRQoL questionnaires, previously developed in culturally distinct countries, with almost unlimited access to different treatment regimens.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
459-466Informations de copyright
© 2020 John Wiley & Sons Ltd.
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