Multimorbidity, functional impairment and health-related quality of life in postural orthostatic tachycardia syndrome: findings from an Australian observational cohort study
Marie-Claire Seeley, Gemma Wilson, Eric Ong, Amy Langdon, Jonathan Chieng, Danielle Bailey, Kristina Comacchio, Amanda Page, Dennis Lau, Celine GallagherObjectives
To characterise the symptom, comorbidity and diagnostic journey of adult and older adolescent patients with postural orthostatic tachycardia syndrome (POTS).
Design
Cross-sectional observational cohort study.
Setting
Participants ≥16 years old with physician-confirmed POTS who enrolled in the Australian POTS registry between 1 May 2021 and 30 April 2024 were included.
Participants
500 participants enrolled in the Australian POTS registry.
Outcome measures
Health-related quality of life and symptom severity were assessed using validated patient-reported outcome measures, including the Composite Autonomic Symptom Score, EuroQol 5-Dimension-5 Level (EQ-5D), Gastroparesis Cardinal Symptom Index (GCSI), Fatigue Severity Scale (FSS) and the 5-point hypermobility index scores. Sociodemographics, diagnostic journey details and comorbidities were obtained via self-reported questionnaires and reconciled with medical records by the clinical team.
Results
Among 500 participants (86.8% females, 92.7% White; mean age 31.3±11.7 years), the median diagnostic delay was 3.0 years (IQR 9.0; mean 6.7 years), with 25.5% experiencing a delay of ≥10 years. Despite being young and highly educated, 22.0% were unemployed or unable to attend education. Infection was the most frequently identified proximal trigger and accounted for 39.4% of cases. Higher autonomic symptom burden, as reported on the Composite Autonomic Symptoms Score (COMPASS-31) questionnaire, was associated with greater fatigue (FSS: 56.0±8.8 vs 48.0±14.5; p<0.001), gastrointestinal symptoms (GCSI: 1.60±0.77 vs 0.89±0.63; p<0.001), increased healthcare utilisation and worse quality of life (EQ-5D utility: 0.547±0.237 vs 0.717±0.200; p<0.001), assessed using Mann-Whitney U and χ 2 tests as appropriate.
Conclusions
POTS is associated with significant diagnostic delays, high healthcare utilisation, substantial symptom burden, educational, social and occupational impacts. Patient-reported outcome measures such as the COMPASS-31 questionnaire can assist in identifying high-risk individuals. Systemic healthcare reform is urgently needed to improve access to timely diagnosis and effective treatment for individuals living with POTS.
Trial registration number
ACTRN12621001034820.