User profile of people contacting a stroke helpline (StrokeLine) in Australia: a retrospective cohort study.

BACKGROUND: StrokeLine is a specialised telephone helpline led by health professionals in Australia. AIMS: (i) To describe the profile of StrokeLine callers; (ii) to understand the reasons people engage with the service and (iii) how StrokeLine responded to the caller's needs. METHODS: Routine call data were obtained from the StrokeLine between November 2019 and November 2020. Data were extracted and descriptive analyses performed. De-identified free-text data were obtained separately for November 2019 and June 2020 and analysed using qualitative content analysis. RESULTS: Of the 1429 calls most were from carers, family and friends (38%) or the stroke survivor themselves (34%). Most calls were made by women (64%) and the average age of the stroke survivor was ≥65 years (33%) with the time since the stroke occurred <1 year. The main reason for calling was to manage stroke-related impairments (40%). Providing information, support and advice was the most common action provided by StrokeLine staff (25%). Content analysis of 225 calls revealed most stroke survivors called for emotional support, while carers sought more practical guidance. StrokeLine provided information for referral to relevant services and guidance on what to do next. CONCLUSIONS: Most calls were received from family and carers, as well as stroke survivors. They contacted StrokeLine for information and advice, practical solutions, emotional support, and referral advice to other services.

A systematic review of the psychometric properties of Quality of Life measures for school aged children with cerebral palsy.

BACKGROUND: This systematic review aimed to evaluate the psychometric properties and clinical utility of all condition specific outcome measures used to assess quality of life (QOL) in school aged children with cerebral palsy (CP). METHODS: Relevant outcome measures were identified by searching 8 electronic databases, supplemented by citation tracking. Two independent reviewers completed data extraction and analysis of the measures using a modified version of the CanChild Outcome Measures Rating Form. RESULTS: From the 776 papers identified 5 outcome measures met the inclusion criteria: the Care and Comfort Hypertonicity Questionnaire (C&CHQ), the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD), CP QOL-Child, DISABKIDS and PedsQL 3.0 CP Module. There was evidence of construct validity for all five measures. Content validity was reported for all measures except PedsQL 3.0. The CPCHILD and CP QOL-Child were the only outcome measures to have reported data on concurrent validity. All measures, with the exception of one (C&CHQ) provided evidence of internal reliability. The CPCHILD and the CP-QOL-Child had evidence of test-retest reliability and DISABKIDS had evidence of inter-rater reliability. There were no published data on the responsiveness of these outcome measures. CONCLUSIONS: The CPCHILD and the CP QOL-Child demonstrated the strongest psychometric properties and clinical utility. Further work is needed, for all measures, on data for sensitivity to change.