Measure what matters: considerations for outcome measurement of care coordination for children with neurodevelopmental disabilities and medical complexity.

Introduction: Care Coordination (CC) is a significant intervention to enhance family's capacity in caring for children with neurodevelopmental disability and medical complexity (NDD-MC). CC assists with integration of medical and behavioral care and services, partnerships with medical and community-based supports, and access to medical, behavioral, and educational supports and services. Although there is some consensus on the principles that characterize optimal CC for children with NDD-MC, challenges remain in measuring and quantifying the impacts of CC related to these principles. Two key challenges include: (1) identification of measures that capture CC impacts from the medical system, care provider, and family perspectives; and (2) recognition of the important community context outside of a hospital or clinical setting. Methods: This study used a multilevel model variant of the triangulation mixed methods design to assess the impact of a CC project implemented in Alberta, Canada, on family quality of life, resource use, and care integration at the broader environmental and household levels. At the broader environmental level, we used linked administrative data. At the household level we used quantitative pre-post survey datasets, and aggregate findings from qualitative interviews to measure group-level impacts and an embedded multiple-case design to draw comparisons, capture the nuances of children with NDD-MC and their families, and expand on factors driving the high variability in outcome measures. Three theoretical propositions formed the basis of the analytical strategy for our case study evidence to explore factors affecting the high variability in outcome measures. Discussion: This study expanded on the factors used to measure the outcomes of CC and adds to our understanding of how CC as an intervention impacts resource use, quality of life, and care integration of children with NDD-MC and their families. Given the heterogeneous nature of this population, evaluation studies that account for the variable and multi-level impacts of CC interventions are critical to inform practice, implementation, and policy of CC for children with NDD-MC.

Care coordination of children with neurodevelopmental disabilities and medical complexity during the COVID-19 pandemic: Caregiver experiences.

BACKGROUND: The COVID-19 pandemic and subsequent public health restrictions created significant challenges for children with neurodevelopmental disabilities with medical complexity and their caregivers including restrictions in care coordination for children and their families. Care coordination enhances families' skills in accessing and coordinating medical, education and disability care across sectors and systems. OBJECTIVE: This study examined the implications of pandemic restrictions on care coordination from caregiver perspectives. These experiences can inform emergency preparedness planning and recovery strategies. METHOD: A qualitative descriptive design was utilized to explore and describe the experience of caregivers of children with neurodevelopmental disabilities and medical complexity. Nineteen caregivers were interviewed about their experience with care coordination during the pandemic. FINDINGS: Caregiver experiences of care coordination during the pandemic highlighted the importance of care coordination during a public health emergency. Two themes emerged: (1) disruptions to care coordination from initial COVID-19 restrictions leading to lack of access to supports and services, increasing level of need, and impacts of disruption for caregivers and children; and (2) adaptation and responsiveness to COVID-19 restrictions by advocating for families and managing uncertainties. RECOMMENDATIONS: Recommendations include recognition of care coordination as a protective factor, designation as an essential service and sustained or increased funding for care coordination during emergencies. Families should be engaged in identifying care needs during care coordination, including during public health emergencies.

Improving Care for Families and Children with Neurodevelopmental Disorders and Co-occurring Chronic Health Conditions Using a Care Coordination Intervention.

OBJECTIVE: This clinical intervention study aimed to improve care integration and health service delivery for children with concurrent neurodevelopmental disorders and chronic health conditions. This population has significant unmet needs and disproportionate deficits in service delivery. A lack of coordination across child service sectors is a common barrier to successful treatment and support of children with neurodevelopmental disorders with complex medical needs. METHODS: This project implemented an innovative care coordination model, involving one-on-one supports from a trained care coordinator who liaised with the broader intersectoral care team to improve joint care planning, integration of services, and the experience of both families and care providers. To evaluate the impact of care coordination activities, a single-group interventional study was conducted using a repeated-measures framework (at 0, 6, and 12 months) using previously established outcome measures. RESULTS: Over 2 years, this project provided care coordination to 84 children and their families, with an age range from 2 to 17 years. The care coordination intervention demonstrated positive impacts for children, families, and care teams and contributed to clinical efficiencies. Children had fewer visits to the emergency department and less frequent acute care use. Improvement in access to services, joint care planning and communication across providers, and better linkage with school supports were demonstrated. Families reported that the program decreased their stress around coordinating care for their child. CONCLUSION: This work demonstrated that intersectoral care coordination is attainable through innovative and collaborative practice for children with complex neurodevelopmental and medical needs.

Redesign of the autism spectrum screening and diagnostic process for children aged 12 to 36 months.

Diagnosing autism spectrum disorder (ASD) is challenging, resource-intense and time-consuming due to clinical and etiologic heterogeneity. With the rapid increase in prevalence of ASD, higher demand for diagnostic assessment often means long waitlists for families, and limited access to specialized intervention and support. In 2013, the Alberta Children's Hospital-Autism Spectrum Disorder Diagnostic Clinic (ACH-ASDC) experienced a significant waitlist in the 12 to 36 months' population. A Quality Improvement Project was started in 2014; one program aim was to create an efficient, sustainable and evidence-based ASD diagnostic evaluation process. The redesigned diagnostic process included: 1) pre- and postassessment parent information sessions, 2) a screening appointment and 3) standardized clinical appointment pathways. Within its first year, the new process reduced wait times to under a month without an increase in resources, leading to an efficient diagnostic process being sustained since its implementation.