Comparison of key findings relating to care coordination in children with three complex conditions: A MOCHA study

Abstract

Introduction: Children and adolescents with complex care needs CNN living in the community require the care of a variety of primary and secondary healthcare service providers. Conducted as part of a large ongoing EU Horizon 2020 funded project Models of Child Health Appraised MOCHA, the aim of this study was to provide a contemporary account of the approaches to the integration of care at the acute/community interface for children with CNN. Methods: Utilising a mixed-methods design, 30 European countries were surveyed, using a local country agent – an expert in child health. Each survey consisted of a vignette and open and closed-ended questions adapted from the Standards for Systems of Care for Children and Youth with Special Health Care Needs 1and the Eurobarometer Survey 2. Vignettes were developed based on three clinical exemplars: Long-term Ventilation LTV, Intractable Epilepsy, and Traumatic Brain Injury TBI. Categorical data were analysed using descriptive statistics. Textual data were analysed using thematic network analysis 3. This abstract presents a comparison of the key quantitative findings pertaining to care coordination across the three exemplar conditions. Results: Twenty-three countries 76.7% provided categorical data that could be analysed in relation to care coordination for all three exemplars. Of these countries, ten 43.5% reported they had no mechanisms policies and/or procedures to promote care coordination for children assisted with LTV. A smaller proportion of countries 39.1%, n=9 indicated that they did not have care coordination mechanisms for children with intractable epilepsy or adolescents with TBI. Personalised care plans are developed in consolation with parents/guardians of children assisted with LTV 82.6%, n=19 or with intractable epilepsy 73.9%, n=17 in the majority of countries. The parents/guardians of adolescents with TBI were included in the development of personalised care plans in a smaller proportion of countries 52.2%, n=12. Discussion: It is likely that there is no one-size-fits-all” approach to facilitating optimum care for children with CCN, given the diverse nature of conditions represented within this cohort. Complex conditions with a higher prevalence may have specific facilitators at the acute/community interface that are not reflective of rarer conditions Conclusions: The results suggest that there are limited mechanisms in place to support the provision of coordinated care for children/adolescents with the three exemplar conditions across 23 European countries. Lessons learned: This study was reliant on data from a large number of informants being collated by local agents across the 30 MOCHA countries. This process was assisted by the development and utilisation of a glossary of terms in each survey, which ensured uniform comprehension of the included terms. Limitations: The response rate for returning surveys pertaining to all three exemplar conditions was 76.7%, which was lower than expected. This may have been due to the comparative length of each survey, which was required to build a comprehensive representation of care for children with the three exemplar conditions at the acute/community interface. Suggestions for future research: Further research should consider geographical variations in the integration of care for children with CCN within countries.