Family Assessment of the Activities and Participation of Children with Cerebral Palsy

Chercheurs: C. Morris (a), P. Rosenbaum (b), JJ. Kurinczuk (a),
R. Fitzpatrick (a) (a) University of Oxford, UK
(b) McMaster University, Canada

To measure the ‘activities and participation’ of children with cerebral palsy, as defined by the International Classification of Functioning, Disability and Health (ICF), using family assessed instruments.

A structured review of family assessed instruments appropriate for measuring children’s activities and participation’ was undertaken to identify questionnaires for use in a postal survey. Indices of children’s ‘activities and participation’ were family assessment of the Gross Motor Function (GMFCS) and Manual Ability (MACS) Classification Systems, the Activities Scale for Kinds (ASK) and Lifestyle Assessment Questionnaire (LAQ-CP). Classification of children.s GMFCS and MACS were also gathered from health professionals nominated by families. The study population was a complete geographically defined population of children with cerebral palsy between 6 and 12 years old, identified from the 4Child epidemiological database in Oxford, UK. Details of children’s impairments, recorded by 4Child when the child was 5 years, were used as explanatory variables in multiple regression analyses to identify the effect of specific disabilities on children’s ‘activities and participation’.

Families of 129/314 (40%) of the children invited to be part of this study participated in the survey. These children did not differ from children who did not participate by their age, gender or type and distribution of their cerebral palsy. Children of participating families had marginally better upper and lower limb function and less severe intellectual delay than non-participants, although these differences were not statistically significant. Families’ rating for the GMFCS and MACS were highly reliable compared to those of health professionals. The ASK and LAQ-CP instruments performed with good internal reliability and were generally acceptable to families, though notably the ASK was idendified as unsuitable for children in GMFCS Level V. Scores for tes ASK and LAQ-CP domains, representing children’s activities and participation, were best predicted by the GMFCS, MACS and intellectual disability, although seizures and speech problems were also predictive of restrictions for the ASK and the LAQ-CP mobility and physical independence domains.

Family assessments of children’s movement and manual abilities using the GMFCS and MACS were highly reliable compared to those made by health professionals. In concordance with similar studies that have used professionally assessed measures, children’s activities and participation were most adversely affected by movement, manual and intellectual disabilities. Family assessment offers a highly reliable method for measuring children’s activities and participation; however currently available instruments do not fully represent all the domains in the ICF.