Upper limb function in everyday life of children with cerebral palsy: description and review of parent report measures

Abstract

Purpose: To determine the role, in clinical practice and measurement of outcomes of upper limb interventions, of cerebral palsy-specific self- or parent-report measures of upper limb performance in everyday activities.

Method: Search of databases and handsearching for information on test development procedures, psychometric properties or relevant studies to inform study objectives.

Results: Children's Hand-use Experience Questionnaire holds most promise for guiding treatment planning but requires more psychometric evidence. ABILHAND-Kids has the strongest evidence for reliability, validity and sensitivity to change; evaluates impact of intervention on bimanual performance and can be used for children with unilateral or bilateral cerebral palsy. The original and revised versions of the Pediatric Motor Activity Log (PMAL) evaluate unilateral rather than bimanual upper limb performance. Neither ABILHAND-Kids nor PMAL offer information to assist treatment planning. PMAL-R is the only measure for the 2-5-year age group. No measure was adequate for children younger than 2 years to ascertain parents' perception of upper limb function in everyday activities.

Conclusions: Understanding upper limb performance in everyday life, as perceived by children with cerebral palsy and their families, informs a comprehensive assessment and acknowledges the importance of the perspectives of child and family. Implications for Rehabilitation Cerebral palsy-specific self- or parent-report measures of upper limb performance in everyday life complement observational assessments in understanding upper limb performance CHEQ provides clinical information, ABILHAND-Kids is validated for children with unilateral and bilateral cerebral palsy and possesses the most robust psychometric properties, Revised PMAL measures unilateral upper limb use. No adequate measure for children under 2 years exists.

Keywords: Assessment; outcome measures; parents; performance.