Examining the emotional impact and financial strain on caregivers of those with Duchenne muscular dystrophy in Saudi Arabia: findings from a questionnaire-based cross-sectional study.

BACKGROUND

Duchenne muscular dystrophy (DMD) is a severe, progressive, and life-limiting neuromuscular disorder that imposes a substantial economic burden on healthcare systems and families. While the clinical severity of DMD is well established, limited data exist regarding its socioeconomic and psychological impacts in Saudi Arabia. This study investigated patient and caregiver demographics, direct out-of-pocket expenditures, caregiver depression and anxiety, and health-related quality of life (HRQoL).

METHODS

A descriptive, cross-sectional, questionnaire-based telephone survey was conducted over a 12-month period, from September 2023 to September 2024 among caregivers recruited from outpatient neurology clinics at a university-affiliated tertiary care center in Riyadh, Saudi Arabia. Data were collected using validated Arabic-language instruments, including the Costs for Patients Questionnaire (CoPaQ) for expenditures, the 9-item Patient Health Questionnaire (PHQ-9) for depression, the 7-item Generalized Anxiety Disorder (GAD-7) scale for anxiety, and the EuroQol 5-Dimension 5-Level (EQ-5D-5L) for HRQoL.

RESULTS

The study included 40 informal caregivers, predominantly fathers (57.5%) and males (57.5%), with a mean age of 42 years. Most participants (77.5%) did not have private health insurance. Families incurred significant financial strain, with a mean total out-of-pocket expenditure of US$ 12,400 ± 14,070.27, driven primarily by prescription medications, annual medical travel, and home modifications. Low-income families were disproportionately affected. Caregivers experienced considerable psychological distress, as indicated by a mean PHQ-9 score of 8.18 and a mean GAD-7 score of 7.2. Bivariate linear regression showed that greater depression severity (p = 0.0003), greater anxiety severity (p < 0.0001), the presence of caregiver chronic health conditions (p = 0.0034), and caring for more DMD patients (p = 0.0008) were significantly associated with lower EQ-5D-5L utility scores. In contrast, higher monthly income (p = 0.0029) and male gender (p = 0.0454) were significantly associated with higher utility scores.

CONCLUSION

Informal caregiving for children with DMD in Saudi Arabia frequently results in severe psychological distress and substantial out-of-pocket expenses. Assessment of HRQoL and caregiver mental health highlights an urgent need for national clinical pathways, enhanced physician education, and comprehensive, family-centered public health interventions.