Abstract
IntroductionHealth-related quality of life evaluation is recognized as an important outcome in the assessment of boys with haemophilia. In fact, reliable health-related quality of life data are even more critical in developing countries to advocate for government agencies to develop national haemophilia care programmes. However, validated tools are not yet available in sub-Saharan African countries.AimsThe purpose of this study was to complete the cultural adaptation and validation of the Canadian Haemophilia Outcomes-Kids’ Life Assessment Tool version2.0 (CHO-KLAT2.0) in Côte d’Ivoire.MethodsThe process included four steps: a linguistic adaptation, cognitive debriefing interviews with children and their parents, a validity assessment with the Pediatric Quality of Life Inventory (PedsQL) as a comparator, and a test-retest reliability assessment.ResultsThe initial Ivoirian version of the CHO-KLAT2.0 was developed through a linguistic adaptation performed in close collaboration with members of the local medical team and haemophilia community. Cognitive debriefings were completed with five boys and their parents, with the final Ivoirian version of the CHO-KLAT2.0 developed in September 2017. The validation process included 37 boys with haemophilia (mean age: 11.4 years; 34 with severe and three with moderate forms of haemophilia, all treated on demand) and their parents. Among the child-reported population (n = 20), we observed a mean CHO-KLAT2.0 score of 51.3 ± 9.2; there was a moderate correlation between the CHO-KLAT2.0 and PedsQL scores (r = 0.581; p = 0.007) and an inverse correlation of the CHO-KLAT2.0 and PedsQL scores with the global rating of the degree to which the boys were bothered by their haemophilia. The mean parent proxy CHO-KLAT2.0 score (n = 17) was 53.5 ± 9.8. Among the parents, we found no significant correlation between the Ivoirian CHO-KLAT2.0 and PedsQL scores or between the parent-reported scores and the parent global ratings of bother. The test-retest intraclass correlation coefficient was 0.879 (95% CI: 0.673; 0.954) for the child-reported questionnaires and 0.880 (95% CI: 0.694; 0.955) for the proxy-reported questionnaires.ConclusionsA cross-culturally adapted and validated version of the CHO-KLAT2.0 for Côte d’Ivoire is now available that enables baseline values to be obtained and intervention outcomes (namely, prophylaxis) to be measured in Ivoirian boys with haemophilia.
Highlights
Health-related quality of life evaluation is recognized as an important outcome in the assessment of boys with haemophilia
Cognitive debriefings were completed with five boys and their parents, with the final Ivoirian version of the CHO-KLAT2.0 developed in September 2017
Among the child-reported population (n = 20), we observed a mean CHO-KLAT2.0 score of 51.3 ± 9.2; there was a moderate correlation between the CHO-KLAT2.0 and Pediatric Quality of Life Inventory (PedsQL) scores (r = 0.581; p = 0.007) and an inverse correlation of the CHO-KLAT2.0 and PedsQL scores with the global rating of the degree to which the boys were bothered by their haemophilia
Summary
Health-related quality of life evaluation is recognized as an important outcome in the assessment of boys with haemophilia. Reliable health-related quality of life data are even more critical in developing countries to advocate for government agencies to develop national haemophilia care programmes. Depending on residual coagulation factor activity, people with haemophilia (PWH) experience various degrees of bleeding, primarily affecting the joints, muscles, and soft tissues [2]. Haemophilia-related complications and treatment have a major impact on health-related quality of life (HRQoL) [4]. Given that HRQoL is closely linked to people’s culture, HRQoL tools developed in one context may not reflect how people from another culture view their health, and assessment tools often require crosscultural adaptation and validation [5,6,7]. The process of the cross-cultural translation and adaptation of HRQoL measures is well-documented in the literature [8, 9], including modified methods that enable limitations, such as small sample sizes of children with rare disorders, to be overcome [10]
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