The impact of care coordination for children with medically complex cerebral palsy: a protocol for a multiple methods study

Abstract Background : Children with medically complex cerebral palsy have severe functional limitations and multiple medical comorbidities requiring frequent hospital appointments and admissions and input from many clinical specialties over the course of each year. Complex care programs, which coordinate care for children with medical complexity, are growing in number internationally, however there is little evidence to guide their design and implementation, particularly in the Australian health care setting. This paper reports on a protocol for a study that will explore: 1) the impact of receiving support from a complex care service on service utilisation and costs, and 2) the experiences and perspectives of caregivers of children with medically complex cerebral palsy and health care professionals involved in the care of these children. Information obtained will be used to co-design improved care pathways to optimise access, experiences and outcomes of health services for this vulnerable group. Methods: This study will use a multiple-methods, three-phase, observational design through an integrated knowledge translation approach. Phase 1 will examine: 1) existing quantitative data regarding in- and out-patient hospital service utilisation, and 2) health, disability and socio-demographic characteristics of children with medically complex cerebral palsy, and their families. Phase 2 will: 1) use qualitative methods to explore the perceptions, experiences and cost impacts from family and the service provider perspectives, and 2) synthesise evidence for an outcome framework through a systematic review. Phase 3 will use information gained to co-design (with parents, clinicians and researchers) the crucial components of care-processes and methods for evaluating care outcomes, that can be embedded and tested within the clinical setting, including cost-effectiveness. Discussion: This co-designed multiple-methods study aims to enhance outcomes for children with medically complex cerebral palsy and their families. The results will influence the way healthcare services are delivered to this population locally, with transferability to other healthcare services nationally and internationally. Findings will contribute to the limited evidence currently available and therefore provide much needed guidance for service providers to optimise the way healthcare is delivered to this vulnerable and complex population of children. Trial Registration : This trial is registered with the Australian New Zealand Clinical Trials Registry. (ACTRN12622000678796p).