Abstract

Background: There has been increasing interest in the patients perspective on the outcome of the treatment. The Haemophilia Activity List (HAL) has been developed as a disease-specific questionnaire for haemophilia patients and is a validated self-report measure of function developed according to WHO International Classification of Functioning, Disability and Health. In this study, we performed a cross-cultural adaptation and linguistic validation of the HAL questionnaire to assess the health-related quality of life in Korean hemophilia patients in the future.Methods: To validate HAL in Korean, the English versions of HAL were translated into Korean using the forward-backward translation method and merged into a final Korean version. Validation was performed against the Korean version of the questionnaires EQ-5D-5L (EQ-5D) as general tool and Routine Assessment of Patient Index Data (RAPID3) as similar disease-specific tool. All processes were done with permission of the developer and according to WHO guidelines.Results: One hundred patients with severe and moderate forms of haemophilia A and B from Korea Hemophlia Foundation were invited to participate in the study. Spearmans rank correlation test was used for validation and internal consistency of the HAL was calculated with Cronbach alpha.Eighty-seven patients (87%) (18-62 years old) answered the questionnaires.The internal consistency of the Korean version of HAL was high, with Cronbachs alpha being 0.80-0.95.Upper extremity function had the highest consistency and leisure activities and sport had the lowest. The correlation was good between the HAL overall score and EQ-5D overall (r=0.78), EQ-5D usual activity (r=0.79), and RAPID3 physical function (r=0.82).Conclusion: The Korean version of HAL has reliability from internal consistency and intraclass correlation by test-retest analysis. The Korean version of HAL has validity which correlated with EQ-5D as general tool and RAPID3 as similar disease-specific tool. This questionnaire of Korean version can be useful as a hemophilia disease-specific instrument for evaluation of the health-related quality of life in Korean patients. [Display omitted] DisclosuresNo relevant conflicts of interest to declare.

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