Development and Validation of an Observational Tool to Evaluate Upper Extremity Functioning or Hand-object Interaction in Children Diagnosed With Bilateral Cerebral Palsy GMFCS II, IV, and V

Cerebral palsy is the most common physical disability among children. Children diagnosed with bilateral cerebral palsy (BCP) have limited mobility and hand use due to a neurological insult in utero or during the first year of life, resulting in hypertonicity or uncontrolled movements which impede upon optimal performance and participation in daily life. Although occupational therapists evaluate and provide interventions throughout a child’s development, only two validated assessment tools exist for children with BCP: Melbourne Assessment 2 and Both Hands Assessment, and ABILHAND-Kids questionnaire. The purpose of this study was to (a) develop an observational tool to evaluate upper extremity functioning in children with BCP during everyday tasks, and (b) determine the tool’s content validity, preliminary inter-rater reliability, and internal consistency. The Hand-object Observation Tool (HOOT) was developed, standardized, and evaluated for content validity via expert review and feedback regarding relevance for children with BCP. Following pilot administration to three children and content validation by expert clinicians (n = 8), the HOOT was administered to six children diagnosed with BCP, GMFCS III, IV, and V. Three licensed occupational therapists and the primary investigator observed and scored video-recordings of the administration. Cohen’s kappa was used to determine inter-rater reliability among three pairs of clinician raters and the gold standard. Internal consistency of items was analyzed using Cronbach’s alpha coefficient. The content of the HOOT is consistent with expert opinions and the Content Validity Index results met criteria for retaining items. This study further suggests that HOOT scores are reliable indicators of upper extremity functioning in children with BCP. Rater agreement between occupational therapy raters and the gold standard was almost perfect when scoring hand-object interaction (touch, grasp, transport, manipulate, place, and release). Rater agreement was substantial to almost perfect for hand use and poor to almost perfect for maintenance of posture during tasks. Further research is required to (a) gather additional data from trained clinicians administering the HOOT in community-based settings to more than 30 children with BCP, and (b) analyze scores and performance to determine internal consistency of HOOT items and complete tool refinement and dissemination.