Development and psychometric properties of the Carer - Head Injury Neurobehavioral Assessment Scale (C-HINAS) and the Carer - Head Injury Participation Scale (C-HIPS): Patient and family determined outcome scales

Objective: Develop and assess the psychometric properties of the Carer - Head Injury Participation Scale (C-HIPS) and its biggest factor the Carer - Head Injury Neurobehavioral Assessment Scale (C-HINAS). Furthermore, the aim was to examine the inter-informant reliability by comparing the self reports of individuals with traumatic brain injury (TBI) with the carer reports on the C-HIPS and the C-HINAS. Method: Thirty-two TBI individuals and 27 carers took part in in-depth qualitative interviews exploring the consequences of the TBI. Interview transcripts were analysed and key themes and concepts were used to construct a 49-item and 58-item patient (Patient - Head Injury Participation Scale [P-HIPS]) and carer outcome measure (C-HIPS) respectively, of which 49 were parallel items and nine additional items were used to assess carer burden. Postal versions of the P-HIPS, C-HIPS, Mayo Portland Adaptability Inventory-3 (MPAI-3), and the Glasgow Outcome Scale-Extended (GOSE) were completed by a cohort of 113 TBI individuals and 80 carers. Data from a sub-group of 66 patient/carer pairs were used to compare inter-informant reliability between the P-HIPS and the C-HIPS, and the P-HINAS and the C-HINAS respectively. Results: All individual 49 items of the C-HIPS and their total score showed good test-retest reliability (0.95) and internal consistency (0.95). Comparisons with the MPAI-3 and GOSE found a good correlation with the MPAI-3 (0.7) and a moderate negative correlation with the GOSE (-0.6). Factor analysis of these items extracted a 4-factor structure which represented the domains 'Emotion/Behavior' (C-FUNAS),'Independence/ Community Living', 'Cognition', and 'Physical'. The C-HINAS showed good internal consistency (0.92), test-retest reliability (0.93), and concurrent validity with one MPAI subscale (0.7). Assessment of inter-informant reliability revealed good correspondence between the reports of the patients and the carers for both the C-HIPS (0.83) and the C-HINAS (0.82). Conclusion: Both the C-HINAS and the C-HIPS show strong psychometric properties. The qualitative methodology employed in the construction stage of the questionnaires provided good evidence of face and content validity. Comparisons between the P-HIPS and the C-HIPS, and the P-HINAS and the C-HINAS indicated high levels of agreement suggesting that in situations where the patient is unable to provide self-reports, information provided by the carer could be used.