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Introduction Since the end of 2019, measures have been taken to control the spread of COVID-19. The effects of the pandemic-related precautionary measures on children with developmental disorders require specific attention as these children have greater healthcare needs and mental health concerns, and depend on community-based services for support. Prior to the COVID-19 pandemic, adequate access to multidisciplinary diagnostic evaluations for children and adolescents with suspected developmental disorders was already problematic. This article aims to explore the impact of the policy measures in response to the COVID-19 pandemic on the accessibility, changes in working processes and action strategies after the first lockdown period. Methods A rapid response study was done after the first wave of the virus in Belgium. A questionnaire with open-ended questions was sent out to respondents of all centers for ambulatory rehabilitation, autism reference centers and centers for developmental disorders, three types of organizations identified as main providers of diagnostic evaluations for children and adolescents. Qualitative data were thematically analyzed in an iterative process including researcher triangulation.Results The response rate was 0.60. All centers reported an impact of COVID-19-related policy measures on accessibility, working processes, working practices, workload, planning, and time management, as well as on the quality of the diagnostic assessments and the contacts with clients. Suggestions to decrease the impact of the pandemic-related measures on the care trajectories of children with (suspected) developmental disorder include the definition of priority groups, a temporary increase of public financing to expand team capacity, a less rigid application of regulatory restrictions as well as a temporary assignment stop.Conclusion The impact of the COVID-19 pandemic reinforced the problem of accessibility of multidisciplinary diagnostic evaluations for children suspected of a neurodevelopmental disorder. The organization of health services should guarantee optimal care trajectories for all vulnerable children. Accessibility problems can be reduced by providing “bridging care”, helping children and families with needs to overcome “gaps” of care and support during waiting periods. In the long term, an in-depth exploration of mechanisms that strengthen interorganisational collaboration is required to structurally optimize the capacity and accessibility to care for children with suspected neurodevelopmental disorders.

Aim: To clarify organizational perspectives on diagnostic evaluations for children with neurodevelopmental disorders (NDD), with the goal to enhance interorganizational collaboration and improve accessibility. Method: Focus groups with expert stakeholders in Flanders, Belgium, were organized. Data were analyzed in a continuous, comparative method with researcher and data triangulation, and a member check validation. Results: Fifty-nine people participated in six focus groups. Organizations had no shared vision on diagnostic evaluations of NDD. An interdisciplinary team approach was considered essential. All stakeholders agreed that a diagnostic evaluation is an iterative process along the trajectory of the child. Interpretation: Diagnostic evaluations of NDD should be conceptualized as an integrated process of the child’s care trajectory, differentiating needs-based goals in each phase, and requiring an interdisciplinary team approach. This conceptualization will support a health systems model, allowing interorganizational collaboration to optimize available capacity and increase accessibility.

Background Neurodevelopmental disorders start in early childhood and may restrict personal, scholastic, social and professional development and functioning. Early detection and smooth trajectories of diagnostics, rehabilitation and support affect the child's development and opportunities. A specialized multidisciplinary team must do a diagnostic evaluation. While accessibility to multidisciplinary diagnostics for all children in Flanders (Belgium) is problematic in regular times, the lockdown measures taken by the end of March 2020 in response to the SARS-CoV-2 pandemic could amplify this problem. This article aims to explore the impact of lockdown policy measures on the accessibility of multidisciplinary diagnostics of developmental disorders.Methods This “rapid response” study was commissioned by the Flemish authorities, as a follow up of a broader study on accessibility of multidisciplinary diagnostics. A questionnaire with open-ended questions was sent out to respondents of three key types of facilities: the Centers for Ambulatory Rehabilitation, Autism Reference Centers and Centers for Developmental Disorders. Qualitative data were thematically analyzed in an iterative process by researcher triangulation.Results Measures taken in response to the SARS-CoV-2 pandemic negatively impacted on waiting periods which lengthened with at least three months and even longer for certain target groups. Specific guidelines to minimize the risk of virus contamination, impact on planning, time management and the quality of the diagnostic assessments. Respondents reported them as being time consuming, uncomfortable, with an increasing workload and leading to a reduction in the number of daily diagnostic activities. Suggested catching-up strategies were increase of public funding, a less rigid application of regulations and a complete or partial assignment stop.Conclusion The SARS-CoV-2 pandemic reinforced the existing problem of accessibility because of a general shortage of diagnostic capacity. On a shorter term accessibility problems can be tempered by providing “bridging care” during waiting periods. On the longer term, strengthening regional interorganisational collaboration is required, to enhance more efficient and effective diagnostic trajectories in facilities providing adapted services to the needs of the children.

Background: Unilateral spastic cerebral palsy (USCP) occurs in 30%-68% of infants with perinatal stroke. Early detection of USCP is essential for referring infants to early intervention. The aims of this study were to report motor outcomes after perinatal stroke, and to determine the predictive value of the General Movements Assessment (GMA) and Hand Assessment for Infants (HAI) for detection of USCP. Materials and methods: This was a prospective observational study involving infants with perinatal stroke. GMA was conducted between 10 and 15 weeks post term-age (PTA). The HAI was performed between 3 and 5 months PTA. Motor outcome was collected between 12 and 36 months PTA. Results: The sample consisted of 46 infants. Fifteen children (32.6%) were diagnosed with CP, two children with bilateral CP and 13 with USCP. Abnormal GMA had a sensitivity of 85% (95% confidence interval [CI] 55-98%) and a specificity of 52% (95% CI 33-71%) to predict USCP. When asymmetrically presented FMs were also considered as abnormal, sensitivity increased to 100%, hence the specificity declined to 43%. A HAI asymmetry index cut-off of 23, had both a sensitivity and a specificity of 100% to detect USCP. Conclusion: Using GMA and HAI can enable prediction of USCP before the age of 5 months in infants with perinatal stroke. Nevertheless, GMA must be interpreted with caution in this particular population. The HAI was found to be a very accurate screening tool for early detection of asymmetry and prediction of USCP. (C) 2020 European Paediatric Neurology Society. Published by Elsevier Ltd. All rights reserved.

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.

Background: With constant changes in neonatal care practices, recent information is valuable for healthcare providers and for parental counselling. The aim of the study was to describe the neuro-developmental outcome in a cohort of very preterm (VPT)/very-low-birthweight (VLBW) infants at 2 years corrected age (CA). Material and methods: This is a population-based cohort study of all infants born with a GA

Children born very preterm require additional specialist care because of the health and developmental risks associated with preterm birth, but information on their health service use is sparse. We sought to describe the use of specialist services by children born very preterm in Europe.We analysed data from the multi-regional, population-based Effective Perinatal Intensive Care in Europe (EPICE) cohort of births before 32 weeks' gestation in 11 European countries. Perinatal data were abstracted from medical records and parents completed a questionnaire at 2 years corrected age (4322 children; 2026 females, 2296 males; median gestational age 29wks, interquartile range [IQR] 27-31wks; median birthweight 1230g, IQR 970-1511g). We compared parent-reported use of specialist services by country, perinatal risk (based on gestational age, small for gestational age, and neonatal morbidities), maternal education, and birthplace.Seventy-six per cent of the children had consulted at least one specialist, ranging across countries from 53.7% to 100%. Ophthalmologists (53.4%) and physiotherapists (48.0%) were most frequently consulted, but individual specialists varied greatly by country. Perinatal risk was associated with specialist use, but the gradient differed across countries. Children with more educated mothers had higher proportions of specialist use in three countries.Large variations in the use of specialist services across Europe were not explained by perinatal risk and raise questions about the strengths and limits of existing models of care.Use of specialist services by children born very preterm varied across Europe. This variation was observed for types and number of specialists consulted. Perinatal risk was associated with specialist care, but did not explain country-level differences. In some countries, mothers' educational level affected use of specialist services.UTILIZACIÓN DE SERVICIOS DE SALUD ESPECIALIZADOS EN UN ESTUDIO DE COHORTE EUROPEO DE NIÑOS NACIDOS MUY PREMATUROS: OBJETIVO: Niños nacidos muy prematuramente requieren cuidados especializados adicionales debido a su salud y a los riesgos asociados con la prematuros, sin embargo la información sobre el uso de servicios de salud es escasa. Buscamos describir la utilización de servicios especializados por niños nacidos muy prematuramente, en Europa. MÉTODO: Analizamos datos de una cohorte de nacimientos ocurridos antes de las 32 semanas de gestación tomados del Effective Perinatal Intensive Care in Europe (EPICE), basado en la población y multirregional, en 11 países europeos. Los datos perinatales fueron extraídos de las historias clínicas y los padres completaron un cuestionario a los 2 años de edad corregida (4.322 niños; 2026 sexo femenino, 2.296 masculino; edad gestacional mediana 29 semanas, rango intercuartílico (IQR) 27-31 semanas; mediana de peso de nacimiento 1.230 gr, IQR 970-1.511 gr). Comparamos el uso de servicios especializados (según informe de los padres) por país, riesgo perinatal (basado en edad gestacional, bajo peso para edad gestacional y morbilidades neonatales), educación materna y lugar de nacimiento. RESULTADOS: En total 65% de los niños habían consultado por lo menos a un especialista, con un rango entre países de 53,7% a 100%. Los especialistas más frecuentemente consultados fueron Oftalmólogos (53,4%) y Fisioterapeutas (48%) pero los especialistas consultados por cada individuo variaron mucho según el país. El riesgo perinatal se asoció al uso de especialista, pero el gradiente varió entre los países. Niños de madres con mayor nivel educativo tuvieron mayor proporción de uso de especialistas en tres países. INTERPRETACIÓN: Las grandes variaciones en el uso de servicios especializados en Europa no fueron explicadas por el riesgo perinatal y arrojan cuestionamientos sobre las fortalezas y limitaciones de los modelos de cuidados existentes.USO DE SERVIÇOS DE SAÚDE ESPECIALIZADOS EM UMA COORTE EUROPÉIA DE LACTENTES NASCIDOS MUITO PREMATUROS: OBJETIVO: Crianças nascidas muito prematuras requerem cuidado especializado adicional por causa dos riscos à saúde e ao desenvolvimento associados ao nascimento premature, mas informações sobreo uso de serviços de saúde são escassas. Procuramos descrever o uso de serviços especializados por crianças nascidas muito prematuras na Europa. MÉTODO: Analisamos dados de uma coorte populacional multi-regional, do Cuidado Intensivo Neonatal Efetivo na Europa (EPICE), com lactentes nascidos antes de 32 semanas de gestação em 11 países europeus. Dados perinatais foram extraídos dos registros médicos, e os pais completaram um questionário com 2 anos de idade corrigida (4.322 crianças; 2.026 do sexo feminino, 2.296 do sexo masculino; idade gestacional mediana 29semanas, intervalo interquartile [IIQ] 27-31sem; peso ao nascimento mediano 1,230g, IIQ 970-1511g). Comparamos o uso de serviços especializados reportados pelos pais por país, risco perinatal (com base na idade gestacional, pequeno para a idade gestacional e morbidades neonatais), educação materna e local de nascimento. RESULTADOS: Setenta e seis por cento das crianças consultou pelo menos um especialista, variando entre países de 53,7 a 100%. Oftalmologistas (53,4%) e fisioterapeutas (48,0%) foram os mais frequentemente consultados, mas os especialistas individuais variaram bastante por país. O risco perinatal se associou com uso de serviços especializados, mas o gradient diferiu entre países. Crianças com mães mais educadas tinham maior proporção de uso de especialistas em três países. INTERPRETAÇÃO: Grandes variações no uso de serviços especializados na Europa não foram explicadas pelo risco perinatal, e levantam questões sobre as forças e limitações dos modelos de cuidado existentes.

Introduction: An early and fluent diagnostic trajectory, accessible for every child, is currently not guaranteed in Flanders despite the availability of different types of settings offering multidisciplinary diagnostics for neurobiological developmental delays or disorders NDDD. Regulative, organizational and work practice differences potentially impact on the development of collaborative networks guaranteeing accessible and integrated diagnostics, along the trajectories of children. Methods: Mapping the regulative frameworks at the federal and community levels for specialized multidisciplinary diagnostic teams for children with suspected NDDD in Flanders. Analysis of policy documents and legal frameworks of the centers for ambulatory rehabilitation CAR, centers for developmental disorders CDD, student guidance centers SGC, ambulatory mental health care centers MHC, autism reference centers ARC, ambulatory hospital services for pediatric neuropsychiatry APP. Results: Organizations are currently regulated by Federal or Community regulations. The different organizations providing multidisciplinary diagnostics for NDDD fall under different policy domains mental health, rehabilitation, hospitals, education. Federal regulations are more detailed and regulate more aspect than community regulations. For diagnostics at a CAR or MHC, children have to be referred. The regulations on target group facility for the CAR, ARC and MHC, is pathology-based; on CDD, SGC and APP more generally described. In a CAR, MHC and APP diagnostics aim at support and rehabilitation. Diagnostics at SGC aims at support, referral and coordination. ARC and CDD do clinical classifying diagnostics, referral and further coordination. The ARC uses a standardized protocol for diagnostics. The regulations on team composition numbers and disciplines are set for the CDD and MHC; more detailed rules are set for ARC, CAR, SGC and APP. Discussion: Literature on policy or mandated networks suggests that network approaches help to tackle complex problems, if settings offer complementary services and are mutually dependent to reach societal goals. The current confusion and ineffectiveness in the field is partly affected by regulations that do not promote collaboration and complementarity. Services were historically regulated specifically in different fields sectors. Those regulations do not refer to collaboration or cooperation. For the population, it is not clear what types of service are offered, how they differ from or overlap with each other, or for what purpose different organizations can be consulted. Conclusion: Regulations in public services impact on the organization of services and clinical practice. Current regulations in Flanders are not adapted to support network practice and an integrated way of providing accessible diagnostics along NDDD trajectories. Lessons learned: Current regulative frameworks for multidisciplinary diagnostics of NDDD are not adequately adapted to implement accessible and integrated care. The literature on mandated or policy networks urges to develop supportive regulative frameworks identifying complementarities of the different types of facilities. Limitations: Private, non-subsidized multidisciplinary settings are not included. Suggestions for future research: Additional health service research is needed on differences in organizational practice in the field of multidisciplinary diagnostics of NDDD, affecting network development, and on governance mechanisms supporting the development of integrated care. This should include research on factors affecting the accessibility of services.

Introduction: Children with a (suspected) neurobiological developmental delay or disorder (NDDD) are clinically expected to be diagnosed by a multidisciplinary team as early as possible, given the impact on subsequent development. In different stages of the disorder trajectory and health care use trajectory of the child, diagnostics are needed to clear out development, evolution and recent symptoms. Currently, there is no evidence on the types and organization of diagnostics and follow-up care children with NDDD need, related to the phases of the trajectory. Methods: Systematicliterature review on neurobiological developmental disorders, (multidisciplinary) diagnostics, disease trajectories. Results: Neurobiological developmental delays and disorders (NDDD) are dysfunctions in the development, involving a large variety in etiology, expression and severity. Assessment at all areas of development (verbal and non-verbal cognition, expressive and receptive language, fine and gross motor development, social communication, social-emotional development) is needed. Classifying and action-oriented diagnostics can be distinguished, as well as mono- and multidisciplinary diagnostics. Mostly, diagnostics are followed by interventions (rehabilitation, support), which may prevent academic failure, behavior problems, dropout, delinquency and the development of more severe mental health issues in later life. These interventions are based on the diagnostic outcome and partly determine the health care use and personal functioning trajectory of a child. Discussion: Diagnostics with different goals are needed at different stages of the trajectory of the child, because of the complexity and dynamic characteristics of NDDD. Mono- or multidisciplinary diagnostics and classifying or action-oriented diagnostics need to be organized in an effective and efficient way and should be easy accessible both on population level, and in different stages of NDDD trajectory. This type of services can be provided in an network model of services integrating types of diagnostics and care. Literature on policy or mandated interorganizational networks suggests that network approaches help to tackle complex problems, if autonomous settings offer complementary services and become mutually dependent to reach common goals. Conclusion: Children with NDDD follow a non-linear trajectory of diagnostics, rehabilitation and support. Specialized diagnostics are needed at different stages along the trajectory of the child. An integrated health care approach taking into account the characteristics of trajectories needs to be enhanced through whole (mandated) networks. Lessons learned: Timely accessible multi- and monodisciplinary classifying and action-oriented diagnostics are needed during the trajectory of a child with a NDDD. Integration of diagnostic and other health services can be realized through (mandated) networks taking into account the health system characteristics. Limitations: This review is conceptual in nature and needs further empirical validation. The empirical part would allow to better understand how local context and health system-characteristics affect the development and implementation of effective networks. Suggestions for future research: Further research on disorder trajectories, health care use trajectories and personal functioning trajectories of children with a NDDD is needed, as well as research on the implementation of (mandated) networks in order to provide accessible quality care for children with a NDDD.

Introduction: Multidisciplinary interprofessional, interorganizational and intersectoral collaboration is considered key to meet the complex needs of persons with an autism spectrum disorder (ASD). However, the “institutional field” potentially challenges the integration of care for persons with ASD in Flanders. This contribution explores how regulations affect adequate trajectories of care for persons with ASD. Methods: An inventory was made of publicly accredited and funded organisations providing (early) detection, diagnostics, treatment and care for children, adolescents and adults with ASD. A qualitative thematic analysis was done of the criteria put forward by Federal and Flanders’ Community/Regional regulations for organisations. This analysis was validated and complemented with information from an expert panel in order to understand barriers and facilitators for collaboration. Results: The inventory learns that more types of organisations in different policy domains provide services for children and adolescents with ASD compared to adults. The regulations setting the criteria for target group, type of ASD related activity, the professional team, access (financial and by referral or not) and organizational characteristics differ according to the sector (health, welfare, persons with disability). The regulations also differ in the level of detail of criteria. Some organisations (and regulations) are dedicated for persons with ASD, while other organisations provide services for a wider range of disorders, including ASD. Discussion: After the 6th state reform in Belgium, Flanders is seeking for an interorganizational collaboration model providing ASD services. This project studies the possibilities for a “mandated interorganizational network” in which general and specialized care are provided in an effective and efficient way, including an accessible regional system of care for persons with ASD. Therefore we need to understand the newly emerging institutional field. At this stage we only performed a rather formalistic thematic analysis of the regulatory conditions. This needs be complemented with a more in depth understanding the cultural-cognitive and the normative characteristics of the field impacting on real life practices of collaboration. Many indications are found that , if any, collaborations are mainly informal and rely very much on the personal social network of the professionals involved in ASD. Conclusion: At this stage, regulatory frameworks setting the criteria for organisations providing services in ASD trajectories are not entirely aligned, which will hamper to develop a framework for a mandated network. Further reflections are needed to set the scope of a mandated ASD network Lessons learned: Regulatory frameworks of different policy fields within a complex political organisation affect how a model can be developed to implement a mandated network. Regulatory frameworks do not explicitly define if services are “general” or “specialized and dedicated” for ASD. Further reflections are needed on how to regionally organize a balanced and integrated model of care. Limitations: This paper is limited to a rather formalistic thematic analysis of formal regulations. Suggestions for future research: More “realistic evaluation” is needed on the hampering and facilitating factors of interprofessional and multidisciplinary collaboration.