Development of a short form of the Swedish version of the Hemophilia Activities List

Abstract

An evaluation of an individual's function, activity, and participation in everyday life is an important component of long-term follow-up in health care. The Hemophilia Activities List (HAL) is an instrument that focuses on self-assessed activities and participation in individuals. The original HAL included 42 questions, many of which covered themes that overlapped with one another. To reduce the length of this questionnaire, data collected from the HAL from Swedish persons with hemophilia were analyzed using a three-step process including Rasch modeling, an equidiscriminatory item-total correlation approach, and patient views. Results obtained were combined to generate a 14-item questionnaire. Of note, although it was not considered a separate entity, the function of the upper extremities was addressed as a component of several other domains. The 14-item short form yielded median scores of 85.5 (range 11-100), which were similar to those achieved using the original 42-item version (median score 83, range 13-100). The short form can be used to complement other self-assessment instruments as part of an annual follow-up and will be particularly helpful to identify issues and follow activity and participation over time.

Keywords: Activities; Hemophilia; Participation; Patient-reported outcome; Questionnaire.

Fig. 1

Results from three different methods were merged to generate 14 specific questions to include in the Swedish short version of the Hemophilia Activities List (HAL). Please see Table 1 for additional information. EITC (equidiscriminatory item-total correlation).