To examine the prevalence, categories, and timing of psychosocial stressors preceding Down Syndrome Regression Disorder (DSRD) onset, and to characterize the clinical presentation in a cohort of adolescents and adults evaluated at two specialized referral clinics.
Approach:
Study Design: Retrospective cohort study including individuals diagnosed with DSRD between 2021 and 2024.
Data Collection: Psychosocial stressors occurring ≤ 6 months before symptom onset were identified using a standardized coding matrix and rated by two blinded coders.
Statistical Analysis: Sociodemographic, clinical, and functional severity variables were summarized using descriptive statistics and exact 95% confidence intervals.
Key Findings:
91% of the cohort (31/34) had at least one adverse psychosocial stressor identified (95% CI 76–98).
Most frequent stressor categories included bereavement or illness of a close person (35%; 95% CI 20–54) and separation or displacement of a significant figure (32%; 95% CI 17–51).
Common symptoms at initial assessment included social withdrawal (100%; 95% CI 90-100), psychomotor slowing (97%; 95% CI 85-100), and loss of previously acquired abilities (94%; 95% CI 80-99).
Interpretation:
The study highlights a high prevalence of psychosocial stressors preceding DSRD onset.
Limitations:
The study is observational and does not support causal conclusions.
Exclusion criteria may limit generalizability to all individuals with DSRD.
Conclusion:
The findings provide insights into the psychosocial context of DSRD.
