Haemostasis and Thrombosis Unit, Division of Hematology, Cliniques universitaires Saint-Luc, Brussels, Belgium.
Division of Clinical Hematology, Centre Hospitalier Universitaire de Yopougon, Abidjan, Côte d'Ivoire.
Health Qual Life Outcomes. 2020 Mar 18;18(1):76. doi: 10.1186/s12955-020-01327-x.
Health-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.
The purpose of this study was to complete the cultural adaptation and validation of the Canadian Haemophilia Outcomes-Kids' Life Assessment Tool version (CHO-KLAT) in Côte d'Ivoire.
The 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.
The initial Ivoirian version of the CHO-KLAT 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-KLAT 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-KLAT score of 51.3 ± 9.2; there was a moderate correlation between the CHO-KLAT and PedsQL scores (r = 0.581; p = 0.007) and an inverse correlation of the CHO-KLAT and PedsQL scores with the global rating of the degree to which the boys were bothered by their haemophilia. The mean parent proxy CHO-KLAT score (n = 17) was 53.5 ± 9.8. Among the parents, we found no significant correlation between the Ivoirian CHO-KLAT 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.
A cross-culturally adapted and validated version of the CHO-KLAT 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.
健康相关生活质量评估被认为是评估血友病男孩的重要结果。事实上,在发展中国家,可靠的健康相关生活质量数据对于倡导政府机构制定国家血友病护理计划更为关键。然而,撒哈拉以南非洲国家尚未有经过验证的工具。
本研究的目的是完成在科特迪瓦进行的加拿大血友病生活质量评估工具(CHO-KLAT)的文化适应性和验证。
该过程包括四个步骤:语言适应性、儿童及其父母的认知性访谈、与儿科生活质量量表(PedsQL)进行有效性评估作为比较,以及测试-重测信度评估。
CHO-KLAT 的初始科特迪瓦版本是通过与当地医疗团队和血友病社区成员密切合作进行语言适应性调整而开发的。与五名男孩及其父母完成了认知性访谈,最终于 2017 年 9 月开发出 CHO-KLAT 的科特迪瓦版本。验证过程包括 37 名血友病男孩(平均年龄:11.4 岁;34 名患有严重血友病,3 名患有中度血友病,均按需治疗)及其父母。在儿童报告人群(n=20)中,我们观察到 CHO-KLAT 平均得分为 51.3±9.2;CHO-KLAT 与 PedsQL 评分之间存在中度相关性(r=0.581;p=0.007),CHO-KLAT 与 PedsQL 评分与男孩对血友病困扰程度的全球评分呈反比。17 名父母代理 CHO-KLAT 平均得分(n=17)为 53.5±9.8。在父母中,我们发现科特迪瓦 CHO-KLAT 与 PedsQL 评分之间或父母报告评分与父母对困扰程度的全球评分之间没有显著相关性。儿童报告问卷的测试-重测组内相关系数为 0.879(95%CI:0.673;0.954),代理报告问卷为 0.880(95%CI:0.694;0.955)。
现在提供了经过跨文化适应性和验证的科特迪瓦 CHO-KLAT 版本,可用于获得科特迪瓦血友病男孩的基线值,并衡量干预结果(即预防治疗)。