Symptoms, impairment and treatment needs among youth with orthostatic intolerance in a secondary care setting

Studies characterizing Orthostatic Intolerance (OI) have primarily focused on a specific subtype (e.g., Postural Orthostatic Tachycardia Syndrome, POTS) treated in tertiary care, yet many with impairing symptoms do not meet subtype criteria. Study 1 used structured coding of electronic medical records to explore symptoms and impairment among 226 youth with OI in a common care setting (outpatient cardiology) over a 1-year period. Impairment was evident for 54.7% of youth. Greater impairment was associated with female gender, higher number and frequency of symptoms, and specific symptoms of headache, weakness, or exercise intolerance. Study 2 examined symptoms, functional disability, and treatment interest in a subset of youth from Study 1 (n = 75); data were collected 1-2 years after initial visit via phone interview. Fifty-six percent of participants remained symptomatic, with mean disability exceeding "substantial impairment" and most (78.6%) expressing desire for treatment. Greater disability was associated with more symptoms and the symptom of weakness. Critically, disability was more than twice as high among racial and ethnic minority youth. Results suggest that OI impairment is common among youth in secondary care, and many experience symptoms warranting treatment 1-2 years later. Future studies should identify sources of health disparities and develop efficacious treatments.