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.

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Disclosures

No relevant conflicts of interest to declare.

Topics:
hemophilia a, hemophilias, patient evaluation, world health organization, disability, korea, physical function

Author notes

*

Asterisk with author names denotes non-ASH members.

© 2016 by The American Society of Hematology
2016
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