Healthcare access satisfaction before and during the COVID-19 pandemic among Peruvian children with down syndrome

Background: In Peru, more than 9,000 individuals with Down syndrome (DS) experienced disruptions in healthcare access due to strict limitations on appointment availability and widespread hospital and clinic closures during the COVID-19 pandemic. This study examines changes in parental satisfaction with healthcare access before and during the pandemic (2021 vs. 2019), as reported by caregivers of children with DS. Methods: We conducted a cross-sectional survey between October 2022 and April 2023 among parents of children with DS, aged 2–12 years, affiliated with the Peruvian Association for Children with Down Syndrome. The survey collected information on family demographics, comorbidities, medical care, and satisfaction with healthcare access. The primary outcome was the change in parental satisfaction between 2019 and 2021. The secondary outcome assessed healthcare utilization. Linear regression analysis was used to evaluate associations between healthcare utilization and satisfaction, adjusting for type of disability, parental education level, and type of health insurance. Results: A total of 223 participants were included in the analysis. Developmental delay (75%) and cardiac conditions (41%) were the most commonly reported comorbidities. In 2019, 68.2% of children (n = 152) attended at least one medical appointment, compared to 53.8% (n = 120) in 2021. Among children with visits in both years (n = 72), satisfaction with healthcare access declined by 10.9 points (95% CI: 4.8–16.9; p < 0.01). For those receiving pediatric care during both years (n = 43), satisfaction decreased by 11.8 points (95% CI: 3.4–20.1; p < 0.01). In 2021, all specialties except pediatrics showed a discrepancy between needed and received care, with early intervention services showing the largest gap. Conclusions: The COVID-19 emergency significantly impacted healthcare access satisfaction among children with DS. Strengthening pediatric training in genetic conditions is critical, particularly in low-resource settings where access to specialists is limited.