Accessible diagnostics along the care trajectory of children with a developmental disorder

Background 20% of all children suffer a neurodevelopmental disorder (NDD) worldwide. Each child with a (suspected) NDD should have access to a specialised multidisciplinary diagnostic setting to pass a qualitative and adequate diagnostic trajectory. In Flanders, Belgium, 6 types of public organisations offer multidisciplinary diagnostics of NDD for children. However the objective of timely diagnostics for the population is not realized. Methods Literature review, document- and website analysis, surveys and focus groups were done. Results of the surveys have been analysed by SPSS, focus groups have been thematically analysed by a process of data- and researchers triangulation. Results were discussed and validated by experts in focus groups. Results The response on the survey was 155. 67 surveys were included for analysis. 71 professionals participated in a focus group. As a result of an historical dispersed development, the field of organisations offering diagnostics of NDD in Flanders is heterogeneous. Diagnostics are provided in each region, but not in every region the same competences, knowledge, expertise and capacity are available. Overall it lacks sufficient capacity. The accessibility, nature of the diagnostics, target groups, composition of the diagnostic teams and working processes differ between organisations and are not coordinated. There is no shared interorganisational opinion on the concept and content of diagnostics. An important hampering factor for interorganisational collaboration is the lack of trust in the quality of diagnostics by other organisations. Many ruptures in the overall trajectory hamper continuity of care for NDD. Conclusions Besides creating more diagnostic capacity according to a geographical planning, interorganisational collaboration will tackle the accessibility problem. A coordinated common framework grounded in the logics of cooperation and collaboration of a heterogeneous mix of organisations providing diagnostics, is needed. Key messages Development of collaborative networks of different types of services offering diagnostics will improve the accessibility of early and timely multidisciplinary diagnostics for children with NDD. A shared interorganisational opinion on the concept and content of diagnostics aiming to improve interorganisational trust in the quality of diagnostics, must be developed.