Psychological symptoms in individuals with Spinal Muscular Atrophy (SMA) and their caregivers – results from a nation-wide study in Germany

BACKGROUND: This study investigates the prevalence and associations of psychological symptoms in individuals with Spinal Muscular Atrophy (SMA) and their caregivers, utilizing data from a cross-sectional, observational assessment conducted in Germany. Participants were recruited through the national German SMA registry (June - September 2021), and psychological symptoms were assessed using validated measures such as the Strengths and Difficulties Questionnaire (SDQ) in children with SMA (n = 21) and the German Mini-Symptom-Checklist (Mini-SCL) in adults with SMA (n = 82) and caregivers (n = 67). RESULTS: Results indicate that children with SMA exhibit lower rates of psychological symptoms compared to adults (9.5% vs. 13.4%), with internalizing symptoms (emotional problems, depression, anxiety) being the most prevalent in both age groups. Caregivers also demonstrate psychological symptoms in 14.9%, particularly those of individuals with SMA type 1. Symptom rates did not differ between groups with different motor function level. Significant correlations between caregiver and patient psychological symptoms were observed, while pharmacological treatment showed no significant impact on symptom rates. CONCLUSIONS: Psychological symptoms are common in individuals with SMA and their caregivers, particularly internalizing symptoms, underscoring the importance of routine psychological screening. Additionally, the correlation of patient and caregiver symptoms highlight the interplay between the mental health of both. These findings underscore the importance of integrating psychosocial care for both individuals with SMA and their caregivers to alleviate stress and promote well-being. TRIAL REGISTRATION: German clinical trial register (DRKS), DRKS00022876. Registered 19 October 2020.