Cross-cultural adaptation and validation of Haem-A-QoL in Côte d'Ivoire

TY - JOUR

T1 - Cross-cultural adaptation and validation of Haem-A-QoL in Côte d'Ivoire

AU - Lambert, Catherine

AU - Meité, N'Dogomo

AU - Sanogo, Ibrahima

AU - Lobet, Sébastien

AU - von Mackensen, Sylvia

AU - Hermans, Cedric

N1 - © 2020 John Wiley & Sons Ltd.

PY - 2020/5

Y1 - 2020/5

N2 - INTRODUCTION: 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.AIMS: 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.METHODS: 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).RESULTS: 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.CONCLUSIONS: 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.

AB - INTRODUCTION: 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.AIMS: 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.METHODS: 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).RESULTS: 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.CONCLUSIONS: 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.

KW - Cote d'Ivoire

KW - Cross-Cultural Comparison

KW - Female

KW - Hemophilia A/epidemiology

KW - Humans

KW - Male

KW - Psychometrics/methods

KW - Quality of Life/psychology

KW - Reproducibility of Results

KW - Surveys and Questionnaires

U2 - 10.1111/hae.13987

DO - 10.1111/hae.13987

M3 - SCORING: Journal article

C2 - 32394627

VL - 26

SP - 459

EP - 466

JO - HAEMOPHILIA

JF - HAEMOPHILIA

SN - 1351-8216

IS - 3

ER -