Exploring Social Determinants of Health in Primary Ciliary Dyskinesia.

BACKGROUND

Primary ciliary dyskinesia (PCD) is a genetic ciliopathy characterized by a diverse clinical presentation with marked respiratory complications and adversely impacts quality of life. However, the lived experience of individuals with PCD extends beyond biological complications, intersecting with social determinants of health (SDoH). The role of SDoH in the context of PCD remains insufficiently characterized.

OBJECTIVE

This cross-sectional study aimed to assess the current picture of SDoH insecurity among primary caregivers of pediatric PCD/highly likely PCD patients.

METHODS

The study was conducted at a tertiary care center in Türkiye, from March 1 to October 31, 2024. Primary caregivers of children aged 6-18 years with PCD/highly likely PCD were surveyed using the "Your Current Life Situation" questionnaire. Data on caregiver demographics, income, education, smoking status, and household conditions were collected. Clinical data (BMI, FEV1, hospitalizations, and annual antibiotic courses) were retrieved from patient records. Descriptive statistics and nonparametric tests were applied using SPSS 22.0.

RESULTS

Among 67 respondents (response rate: 73%), 89.6% reported insecurity in ≥ 1 of six SDoH domains. The most common issues were social support/stress (73.1%), healthcare access (53.7%), and financial hardship (49.3%). Most families (86.5%) lived below the poverty line; 55.2% of caregivers had inadequate health literacy.

CONCLUSIONS

A high prevalence of SDoH insecurity was identified among caregivers of children with PCD/highly likely PCD, highlighting unmet psychosocial and healthcare access needs. The substantial proportion of caregivers requiring support underscores the the need for routine SDoH screening, caregiver support, and targeted interventions to promote health equity in PCD patients.