Development of a parent‐reported questionnaire evaluating upper limb activity limitation in children with cerebral palsy

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.

A systematic review of upper limb activity measures for 5‐ to 18‐year‐old children with bilateral cerebral palsy

“…Included standardised tests were the Melbourne Assessment of Unilateral Upper Limb Function (Randall, Johnson, & Reddihough, ) (MA), Melbourne Assessment 2 (Randall, Johnson, & Reddihough, ) (MA2), the Peabody Developmental Motor Scales‐Second Edition (Folio & Fewell, ) (PDMS‐2) – Fine motor composite, and the Both Hands Assessment (Elvrum, Zethræus, & Krumlinde‐Sundholm, )(BoHA). The three parent questionnaires were ABILHAND‐Kids (ABILHAND‐Kids, ; Arnould, Penta, Renders, & Thonnard, ), ACTIVLIM‐CP (Bleyenheuft, Paradis, Renders, Thonnard, & Arnould, ) and Children’s Arm Rehabilitation Measure (Preston et al , ) (ChARM). The child self‐report questionnaire was the Pediatric Upper Limb Measure, Short Form (DeWitt et al , ; Mulcahey et al , ) (PULM‐SF) from the Patient‐Reported Outcomes Measurement Information System (PROMIS) range of instruments.…”

“…The ABILHAND‐Kids, ACTIVLIM‐CP and ChARM are parent questionnaires validated for children with CP. The ABILHAND‐Kids (ABILHAND‐Kids, ) and ChARM (Preston et al , ) measure manual ability in everyday activities. ACTIVLIM‐CP measures global activity (upper extremity, lower extremity and postural control) in daily activities, with 42% of items focused on upper limb only activities (Bleyenheuft et al , ).…”

“…The ChARM does not state in positive terms the activity construct it is measuring, (e.g. capacity or performance qualifier), but rather states it is measuring activity limitation (Preston et al , ). Activity limitation measures the negative aspect of activity, and should also stipulate capacity or performance (4.2 (5), page 14, (World Health Organization, ).…”

“…The recall period of questions is unclear, for example, the measure begins ‘imagine how your child would complete each activity at home’. Only five children from MACS level V were involved in the final summary statistics and represented on the ChARM scale (Preston et al , ). Under‐representation of children with severe impairment has implications for the validity of the measure.…”

“…The proportion of activity construct in each measure was ascertained by reviewing previous literature to establish if a measure's overall domain of measurement using ICF linking rules had been determined. In cases when a measure had been classified against ICF linking rules, these results are reported (Elvrum et al, 2016;Hoare et al, 2011;Preston, Horton, Levesley, Mon-Williams, & O'Connor, 2017). For measures which had not been categorised according to ICF domains, the first author (AB) coded the meaningful concepts of each item in a measure by ICF-CY codes using the ICF Linking Rules (Cieza, Fayed, Bickenbach, & Prodinger, 2016;Cieza et al, 2005), with items assigned to the third or fourth level as appropriate.…”