Long‐Term Postural Orthostatic Tachycardia Syndrome Outcomes Survey: Educational, Economic, and Social Impact

BACKGROUND: Limited data exist on long-term outcomes associated with postural orthostatic tachycardia syndrome (POTS). We designed an online questionnaire to assess outcomes for patients formerly managed in a single-center pediatric POTS program. Here, we report the educational, economic, and social long-term impacts of pediatric POTS. METHODS: In part, the Long-Term POTS Outcomes Survey (LT-POTS) sought to evaluate education, employment, and social impact of POTS. Patients aged ≤18 years at the time of POTS diagnosis were included. The survey was emailed to patients diagnosed or managed in the Children's Hospital of Philadelphia POTS Program. RESULTS: Of 862 patients surveyed, 227 returned questionnaires with enough data for interpretation. Respondents were predominantly women (85%) and White individuals (97%). Half of patients missed >100 days of school, and 20% temporarily dropped out of school. More than 90% of patients graduated high school, and <50% graduated college. Only 26% of patients were able to work >40 hours/week, with 35% having reduced hours due to POTS symptoms. Significant loss of income and financial expenditures were associated with POTS. Loss of social relationships and inability to live independently were additional associated social impacts. CONCLUSIONS: POTS is a long-term disorder associated with significant physical disability as well as adverse educational, economic, and social impacts. Although certain accommodations may mitigate the impact of the disease on education and employment, POTS poses significant educational, economic, and socioemotional risks, requiring further understanding of its pathophysiology and optimization of its management to reduce individual and societal impact.