ACTIVLIM-CP a new Rasch-built measure of global activityperformance for children with cerebral palsy

Abstract

Objective Children with cerebral palsy (CP) often have upper extremity (UE) and lower extremity (LE) impairments. While tools measuring separately UE and LE abilities are currently used, activities in which UE and LE are used in combination – numerous in everyday life – cannot be assessed because no instrument allows capturing global activity performance in children with CP. This study aimed to develop a clinical tool for measuring their global activity performance using the Rasch model. Study design The caregivers of 226 children with CP (2–18 years old) answered a 154-item experimental questionnaire. Within 4–6 weeks, 129 of them filled in the questionnaire a second time. Responses were analyzed using the Rasch RUMM2020 software. Results The final 43 item scale presented a high reliability (R = 0.98) and reproducibility (R = 0.97). The item difficulty hierarchy was consistent over time and did not vary according to age, gender, or clinical form, allowing the follow-up of children from 2 to 18 years old. Conclusions ACTIVLIM-CP is a unidimensional scale specifically developed to measure global activity performance in children with CP providing a reliable tool to follow children’s evolution and document changes related to neurorehabilitation, especially where a combination of UE and LE is targeted. Its responsiveness is still to be tested.