Psychosocial profiles of autonomic dysfunction

Forms of dysautonomia, including Postural Orthostatic Tachycardia Syndrome (POTS), significantly impacts youth, yet psychosocial aspects remain under-researched, particularly outside of patients diagnosed with POTS. This study examines the clinical and psychosocial profiles of youth with autonomic dysfunction and compares findings between groups with different heart rate (HR) responses to orthostatic testing. This retrospective review analyzed demographics, symptoms, quality of life (QoL), and mental health variables (e.g., anxiety, depression, ADHD) in youth with autonomic dysfunction. Differences between higher and lower HR response groups were compared. QoL was assessed using the PedsQL™ and symptom severity was measured with the Malmö POTS Symptom Score (MAPS). Medical history and psychosocial concerns were extracted from electronic medical records. Symptom severity scores exceeded clinical cutoffs for the full sample (65.8) and across HR groups. Independent t-tests showed no differences between groups for any variable. Pain (92.5 %) and impaired eating (42.5 %) were prevalent across the sample. QoL was clinically impaired in all domains, and mental health concerns, such as anxiety (83.3 %) and depression (54.3 %), were common. Findings describe the pervasive symptom and psychosocial burden in youth with autonomic dysfunction, which was consistent across higher and lower HR response groups. The study emphasizes the importance of addressing medical, mental health, and daily life challenges in all patients seen for autonomic dysfunction. Additionally, it highlights the importance of expanding research and clinical focus to include all youth with autonomic dysfunction, regardless of HR response to ensure youth who are experiencing impairment obtain the comprehensive care they need.