Analysis of Scores of Symptom Checklist 90 (SCL-90) Questionnaire of 182 Parents of Children with Spinal Muscular Atrophy: a Cross-sectional Study

Background: Spinal muscular atrophy (SMA) is a hereditary disorder characterized by progressive muscle weakness and atrophy in children. However, less attention is paid to psychiatric symptoms of SMA parents. Attention to the psychiatric symptoms of parents of SMA children can improve the comprehensiveness of family support for SMA children, which is beneficial to the rehabilitation of SMA children. Here, we conducted a survey on the psychiatric symptoms of SMA parents and analyzed its relevant factors, with an attempt to inform the psychological support for SMA parents.

Methods: The Symptom Checklist 90 (SCL-90) and a self-designed basic information (such as parent's gender, household area, place of residence, education background, etc.) questionnaire (in electronic questionnaire) were distributed to parents of SMA children aged 0-18 in a charity WeChat group sponsored by the Meier Advocacy & Support Center for SMA during the period from August 1 to August 31, 2021. Parents completed the electronic questionnaires by mobile phone or computer voluntarily. A total of 188 questionnaires were obtained, of which 182 were valid. Comparisons were performed with the SCL-90 adult norms as the standards. The potential correlations between the general data of SMA parents and children and abnormal factors in the SCL-90 for SMA parents were analyzed.

Results: The SCL-90 factors somatization (1.56±0.80, P=0.002), depression (1.78±0.98, P<0.001), anxiety (1.58±0.87, P=0.007), fear (1.39±0.74, P=0.003), and sleep and eating problems (1.67±0.87, P=0.014) of SMA parents were significantly higher than the national norms. Place of residence was correlated with sleep and eating problems (r=0.158, P=0.033). Increasing age [odds ratio (OR) =1.012, P=0.014] and continuous home-living status (OR =0.360, P=0.031) of SMA children increased the risk of depression in their parents, and the lack of rehabilitation management in SMA children increased the risk of anxiety of their parents (OR =0.409, P=0.038). Non-urban residence (OR =2.602, P=0.017) and poor physical health (OR =0.163, P=0.031) were the relevant factors for the increased risk of sleep and eating problems in SMA parents.

Conclusions: SMA parents have a higher risk of developing psychiatric symptoms problems compared with the general population. Increasing age and the continuous home-living status of SMA children increase the risk of depression in their parents, and the lack of rehabilitation management increase the risk of anxiety in SMA parents.