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

## TL;DR

This study shows that the pandemic reduced healthcare access satisfaction for Peruvian children with Down syndrome, especially for non-pediatric services.

## Contribution

The study quantifies pandemic-related changes in healthcare access satisfaction for children with Down syndrome in Peru using longitudinal caregiver reports.

## Key findings

- Satisfaction with healthcare access dropped by 10.9 points for children with visits in both 2019 and 2021.
- Early intervention services had the largest gap between needed and received care in 2021.
- Only pediatrics showed no discrepancy between needed and received care during the pandemic.

## Abstract

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.

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.

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.

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.

The online version contains supplementary material available at 10.1186/s12887-025-05990-1.