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Contribution title Are Spinal Muscular Atrophy Caregivers Always More Psychologically Burdened Than Parents of Healthy Children?
Contribution code D1.089
Authors
  1. Mustafa Balkanas Istanbul University-Cerrahpaşa, Cerrahpaşa Faculty of Medicine, Istanbul, Turkey Presenter
  2. Berkay Tayşi Istanbul University Cerrahpasa- Cerrahpasa School of Medicine
  3. Büşra Arslan Amasya Sabuncuoglu Serefeddin Research and Trainee Hospital
  4. Elif Anaç Istanbul University Cerrahpasa- Cerrahpasa School of Medicine, Istanbul, Turkey
  5. Sena Kesik Istanbul University Cerrahpasa- Cerrahpasa School of Medicine, Istanbul, Turkey
  6. Seda Sönmez Kurukaya Istanbul University Cerrahpasa- Cerrahpasa School of Medicine
  7. Zehra Koyuncu Department of Child and Adolescent Psychiatry, Cerrahpasa Medical Faculty, Istanbul University-Cerrahpasa, Istanbul, Turkey
  8. Ömer Faruk Demirel Istanbul University-Cerrahpasa, Cerrahpasa Faculty of Medicine
  9. Burak Doğangün Istanbul University-Cerrahpasa, Cerrahpasa Faculty of Medicine
  10. Sema Saltık Istanbul University Cerrahpasa- Cerrahpasa School of Medicine, Istanbul, Turkey
Form of presentation Poster
Topic
  • T20 - Family / systemic therapy
Abstract Aims:
This study aimed to compare quality of life (QoL), caregiver burden, symptoms of depression and anxiety, life satisfaction, and psychological well-being in parents of children with spinal muscular atrophy (SMA) and healthy controls. It also explored differences among SMA subtypes and analyzed the relationships between these variables within the SMA group.


Methods:
A cross-sectional study included 84 participants: 42 parents of children with SMA receiving nusinersen treatment and 42 matched parents of healthy children as controls. The SMA cohort included 16 parents of type 1, 13 of type 2, and 13 of type 3. Validated tools were used to assess QoL, caregiver burden, anxiety, depression, life satisfaction, and well-being. Group differences were assessed with non-parametric tests and correlations with Spearman’s test.


Results:
SMA caregivers reported lower QoL in all domains (p < 0.005) but no differences in burden, anxiety, life satisfaction, or well-being. Within the SMA group, burden and anxiety were higher in type 1 caregivers than type 3 (p = 0.010, p = 0.037, respectively). Anxiety and depression negatively correlated with QoL, while caregiver burden positively correlated with anxiety (p < 0.001).


Conclusions:
While SMA caregivers reported lower QoL compared to controls, no significant differences were observed in burden, anxiety, life satisfaction or well-being. These findings question common assumptions about the psychological impact of caregiving in severe medical conditions and highlight the need for research into resilience and other factors that may protect caregiver well-being. Understanding such factors could guide tailored interventions to improve caregiver outcomes.