Abstract
Background and purposeUpper limb activity measures for children with cerebral palsy have a number of limitations, for example, lack of validity and poor responsiveness. To overcome these limitations, we developed the Children's Arm Rehabilitation Measure (ChARM), a parent‐reported questionnaire validated for children with cerebral palsy aged 5–16 years.This paper describes both the development of the ChARM items and response categories and its psychometric testing and further refinement using the Rasch measurement model.MethodsTo generate valid items for the ChARM, we collected goals of therapy specifically developed by therapists, children with cerebral palsy, and their parents for improving activity limitation of the upper limb. The activities, which were the focus of these goals, formed the basis for the items. Therapists typically break an activity into natural stages for the purpose of improving activity performance, and these natural orders of achievement formed each item's response options. Items underwent face validity testing with health care professionals, parents of children with cerebral palsy, academics, and lay persons.A Rasch analysis was performed on ChARM questionnaires completed by the parents of 170 children with cerebral palsy from 12 hospital paediatric services. The ChARM was amended, and the procedure repeated on 148 ChARMs (from children's mean age: 10 years and 1 month; range: 4 years and 8 months to 16 years and 11 months; 85 males; Manual Ability Classification System Levels I = 9, II = 26, III = 48, IV = 45, and V = 18).ResultsThe final 19‐item unidimensional questionnaire displayed fit to the Rasch model (chi‐square p = .18), excellent reliability (person separation index = 0.95, α = 0.95), and no floor or ceiling effects. Items showed no response bias for gender, distribution of impairment, age, or learning disability.DiscussionThe ChARM is a psychometrically sound measure of upper limb activity validated for children with cerebral palsy aged 5–16 years. The ChARM is freely available for use to clinicians and nonprofit organisations.
Highlights
The Children’s Arm Rehabilitation Measure (ChARM) is a psychometrically sound measure of upper limb activity validated for children with cerebral palsy aged 5–16 years
The ChARM is freely available for use to clinicians and nonprofit organisations
The initial Rasch analysis was conducted on a dataset from 170 ChARMs, each with 40 items, completed by the parents of children with cerebral palsy who were approached anonymously through the 12 regional therapy teams
Summary
Research and reviews investigating these interventions suggest that there is a lack of valid and responsive measures for evaluating changes in upper limb activity limitation (Hoare et al, 2010; Meyer‐Heim & van Hedel, 2013; Palsbo & Hood‐Szivek, 2012; Qiu et al, 2009; Sakzewski, Ziviani, & Boyd, 2009; Sandlund, Mcdonough, & Hager‐Ross, 2009) This is supported by systematic reviews into measures of activity limitation for children with cerebral palsy (Gilmore, Sakzewski, & Boyd, 2010; Greaves, Imms, Dodd, & Krumlinde‐Sundholm, 2010; Klingels et al, 2010). This paper describes both the development of the ChARM items and response categories and its psychometric testing and further refinement using the Rasch measurement model
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