Child or family assessed measures of activity performance and participation for children with cerebral palsy: a structured review

There is a need to measure children's 'activity performance and participation' as defined in the World Health Organization's International Classification of Functioning, Disability and Health for Children and Youth (WHO ICF). The aim of this review is to identify instruments that are suitable for use in postal surveys with families of children with cerebral palsy. We conducted a structured review of instruments that use child or family self-assessment of 'activity performance and participation'. The review involved a systematic search for instruments using multiple published sources. Appraisal of the instruments used the predefined criteria of appropriateness, validity, reliability, responsiveness, precision, interpretability, acceptability and feasibility. There are relatively few child or family assessed instruments appropriate for measuring children's activities and participation. Seven instruments were identified that could potentially be administered by mail. The Assessment of Life Habits for Children (LIFE-H) was the most appropriate instrument as assessed by its content but the reliability of child or family self-assessment is not known. If the LIFE-H were shown to be a reliable self-report measure then the LIFE-H would be the recommended choice. Currently, the Activities Scale for Kids and the condition-specific Lifestyle Assessment Questionnaire for cerebral palsy (LAQ-CP) provide the broadest description of what and how frequently children with cerebral palsy perform a range of activities and thereby indicate participation. The LAQ-CP also provides additional contextual information on the impact of any disability on the participation of the family unit. There remains much scope for developing valid and reliable self-assessed measures corresponding to the WHO ICF dimensions of activities and participation.