Psychosocial stressors prior to Down Syndrome Regression Disorder: findings from two referral clinics.

OBJECTIVE

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.

METHODS

We conducted a retrospective cohort study including all individuals diagnosed with DSRD between 2021 and 2024. Psychosocial stressors occurring ≤ 6 months before symptom onset were identified using a standardized coding matrix and independently rated by two blinded coders. Sociodemographic, clinical, and functional severity variables were summarized using descriptive statistics and exact 95% confidence intervals.

RESULTS

At least one adverse psychosocial stressor was identified in 91% of the cohort (31/34; 95% CI 76-98). The most frequent categories were 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). 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) were the most common symptoms at initial assessment.