JMIR Publications

ABSTRACT

Background:

Fragmented care across sectors inadequately addresses the complex care needs of children with special healthcare needs (SHCN), increasing the risk of adverse health and developmental outcomes and placing a burden on caregivers. Although integrated care may reduce unmet needs and improve care quality, its implementation remains constrained by limited evidence on patient journeys, challenges in care delivery, and the costs associated with care practices.

Objective:

The Pediatric Integrated Care (PICAR) Study aims to (1) examine patient journeys across care sectors and care integration among children with different special healthcare needs (SHCN), compared to those without SHCN, their correlates, and associations with health-related outcomes, (2) identify challenges in care delivery, (3) quantify direct and indirect costs from healthcare system and family perspectives, and (4) develop recommendations to strengthen integrated care for this population.

Methods:

This study uses an exploratory sequential mixed-methods design comprising (1) semi-structured interviews, (2) claims data analyses, (3) a prospective cohort study, and (4) health economic analyses. We conduct interviews with children with SHCN, their caregivers, and healthcare professionals across disciplines and sectors. Claims data from a statutory health insurance fund cover children aged 3–15 years over six-years, including those with selected index diagnoses (type 1 diabetes, asthma, disorders of psychological development, behavioral and emotional disorders, cerebral palsy), and children without SHCN. A random subsample is invited to participate in the cohort study. Interviews explore patient journeys, care-related burden, and opportunities to improve care delivery. Claims data capture service utilization and associated costs across sectors. Informed by qualitative findings, cohort surveys assess perceived care provision (e.g., care integration), family-related aspects (e.g., navigational health literacy), and child and caregiver health status. Health economic analyses quantify direct and indirect costs. Interview data are analyzed using qualitative content and thematic analyses. Claims data are examined using state sequence analyses to identify patterns in patient journeys. Cohort data are analyzed using regression models, propensity score matching, and cluster analyses to examine correlates of care integration, associations between care challenges and health outcomes, and subgroups of families with vulnerability profiles. Data integration and development of recommendations occur iteratively.

Results:

Data collection and analyses of the semi-structured interviews were completed in June 2025, with initial findings published in March 2026. We conducted the first survey of the cohort study between May and October 2025, and plan a second wave for September 2026. Quantitative analyses and mixed-methods integration are ongoing.

Conclusions:

PICAR is among the first studies to comprehensively investigate patient journeys and associated costs among children with different SHCN. The findings inform improvements in routine care delivery, support development of interventions to strengthen integrated care, and provide guidance for health policy, ultimately improving outcomes for children with SHCN and their caregivers. Clinical Trial: not applicable