Shortening the Haemophilia Activities List (HAL) from 42 items to 18 items.

Abstract

IntroductionThe Haemophilia Activities List (HAL) was developed to measure activities and participation in persons with haemophilia (PWH). Shortening the questionnaire may facilitate use of the HAL.AimThe aim of this study was to determine which items of the HAL are redundant, to construct a shorter version of the HAL, and to determine the construct validity of the HALshort.MethodsA secondary analysis was performed on pooled data of two published studies using the HAL (seven domains, 42 items, optimum score: 100) in adults with haemophilia A/B. Data were divided into a derivation (62%) and a validation set (38%). Redundant items were identified by evaluation of: floor and ceiling effects, proportions of missing and ‘not applicable’ responses, inter‐item correlations, component loadings in an exploratory factor analysis, internal consistency, and item‐total correlations. Correlations with the SF‐36 and EQ‐5D‐5L were used to determine construct validity of the HALshort.ResultsData on 680 PWH were evaluated. In the derivation dataset (n = 420), median age was 30 years (range 18–80), 43% had severe haemophilia and 61% received prophylaxis. Median (IQR) HAL sum score was 65.0 (55.7–88.8). The stepwise procedure resulted in a HALshort of 18 items with a median sum score of 63.3 (54.4–86.7). Construct validity was similar for the HAL and HALshort in the validation dataset (n = 260).ConclusionThis clinimetric study resulted in a >50% shortening of the HAL. The 18‐item HALshort reduces patient burden and is expected to capture the information on activities and participation. The HALshort needs further validation.