Abstract Number: PB0582
Meeting: ISTH 2021 Congress
Background: The Haemophilia Activities List (HAL/pedHAL) assesses self-reported limitations in activities and participation in patients with haemophilia. Clinicians and researchers reported some items to be non-informative.
Aims: To determine which items of the (ped)HAL are redundant allowing for modifications and shorter versions of the questionnaires.
Methods: For the pedHAL (7 domains/53 items/optimum score: 100), a secondary analysis was performed on pooled data of six published studies in children. Redundant items were identified in seven steps: floor and ceiling effects, proportions of missing and ‘not-applicable’ responses, inter-item correlations, component loadings in factor analysis, internal consistency and item-total correlations. After removing non-informative items, a pedHALshort was created and pedHAL and pedHALshort sum scores were compared. For the HAL (7 domains/42 items/optimum score: 100), a similar procedure was followed with pooled data of two published studies in adults.
Results: For the pedHAL, data on 315 children (median age 12 [range 4-18], 87% severe haemophilia, 80% on prophylaxis) were evaluated. Median (IQR) pedHAL sum score was 97 (88-100). The stepwise procedure resulted in a pedHALshort of 22 items with a median sum score of 97 (87-100). For the HAL, data on 420 adults with haemophilia (median age 30 [range 18-80], 88% male, 43% severe haemophilia, 61% on prophylaxis) were evaluated. Median (IQR) HAL sum score was 65 (56-89). The stepwise procedure resulted in a HALshort of 18 items with a median sum score of 63 (54 – 87).
Conclusions: This clinimetric study resulted in >50% reduction of the length of the pedHAL and HAL. The 22-item pedHALshort and 18-item HALshort reduce patient burden and are expected to capture accurate information on activities and participation. The next step will be to validate both pedHALshort and HALshort in other populations.
To cite this abstract in AMA style:Kuijlaars IA, van der Net J, Bouskill V, Hilliard P, Juodyte A, Khair K, Schutgens RE, Trakymiene SS, Fischer K. Reducing the Time of HAL and pedHAL Assessment [abstract]. Res Pract Thromb Haemost. 2021; 5 (Suppl 1). https://abstracts.isth.org/abstract/reducing-the-time-of-hal-and-pedhal-assessment/. Accessed September 24, 2021.
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