Quality of Life, Caregiver Burden, and Symptoms of Depression and Anxiety in Parents of Children with Spinal Muscular Atrophy: A Comparison with Healthy Controls.

Background

Spinal muscular atrophy (SMA) is a disease that leads to muscle weakness and significantly affects the lives of both patients and caregivers. This study aims to compare quality of life, caregiver burden, symptoms of depression and anxiety, life satisfaction, and mental well-being between parents of children with SMA and those of healthy children.

Methods

This cross-sectional study included parents of children under 18 years old, both healthy and diagnosed with SMA. The participants completed the WHOQOL-BREF, Zarit Caregiver Burden Scale (ZCBS), Hospital Anxiety and Depression Scale (HADS), Satisfaction with Life Scale (SWLS), and the Flourishing Scale (FS). In addition, the relationships among these measures were analyzed.

Results

Our study showed that the parents of children with SMA had significantly higher scores across all subscales of the WHOQOL-BREF (p = 0.004, p = 0.009, p = 0.007, p < 0.001) and the HADS depression subscale (p = 0.005). However, no significant differences were found between the groups in terms of the ZCBS, the HADS anxiety subscale (p = 0.802), SWLS (p = 0.251), or FS (p = 0.929) scores. Additionally, the ZCBS and HADS anxiety scores were significantly higher among parents of children with SMA type 1 compared to those with type 3 (p = 0.010 and p = 0.037, respectively). Lastly, a moderate positive correlation was found between the ZCBS and the HADS anxiety subscales (r = 0.632, p < 0.001).

Conclusions

This study highlights the decline in quality of life and increased depression symptoms among parents of children with SMA, suggesting the need for psychiatric evaluation and additional support for those caregivers.