Children with Medical Complexity and Their Families: Addressing Social Risks and Advancing Integrated Care Models

Children with medical complexity (CMC) represent a small yet impactful segment of the pediatric population.1 Characterized by serious chronic conditions, often involving medical fragility, significant functional limitations, and extensive health care needs,2 CMC prevalence remains in the US consistently below 1%, with studies generally reporting figures between 0.4% and 0.7% of all children.3-5 However, despite their small numbers, they account for a disproportionate share of health care resources, including approximately one-third of all child health expenditures and over 40% of hospital deaths.6 This growing health care impact highlights a survival paradox: although medical advancements have improved survival rates for these children, the necessary long-term infrastructure and support systems for them and their families have not kept pace.4-6 Similar prevalence estimates have been reported in Europe, where many studies align with the US range, estimating that 0.4%-0.7% of children are classified as CMC,.5,7 However, data within the EU show variability between countries, driven by a range of factors including socioeconomic disparities, regional differences, and variations in clinical conditions. A regional Italian study8 found an episodic local prevalence of 8.4 per 10 000 children under 19 (equivalent to approximately 0.084%), which is notably lower than United Kingdom estimates for life-limiting conditions9 (around 0.2%-0.3%) and was not confirmed at the national level. Epidemiologic data from Catalonia, England, and Wales confirm the 0.4%-0.7% range, but recognize variability across socioeconomic and regional lines.9 The primary burden of care often falls on parents and families, leading to significant negative consequences. Frequent travel for specialized care and the demands of intensive caregiving can place immense stress on families, resulting potentially in lifelong health impacts for primary caregivers, predominantly mothers. Financial problems are widespread, with over half of parents reporting a family member stopping work to provide care.10,11 The challenges faced by CMC families, including fragmented services, insufficient care coordination, and financial strain, are amplified versions of issues common to many with chronic conditions. Thus, improvements in care models for CMC could serve as blueprints for broader systemic enhancements across the health ecosystem. This commentary, prepared by members of the Working Group on Social Pediatrics of the European Pediatric Society, the Union of National European Pediatric Societies and Associations, calls for an urgent paradigm shift toward truly integrated, family-centered care models.12 Although the challenges related to CMC have long been recognized,13 the implementation of effective solutions is still lacking in many regional contexts, including Europe.13 This is largely due to a chronic inability showed by many countries to address public health issues in an organized and collective manner.14,15 Our aim is to highlight further these challenges, emphasizing that integrated, family-centered care models, if they are to be effective, must systematically address social risk factors, promote strong interdisciplinary collaboration, build robust partnerships with community organizations, and be grounded in clear ethical principles to ensure equitable and holistic support for CMC and their families.