12-month outcomes following multidisciplinary management of postural orthostatic tachycardia syndrome (POTS)

Background / Purpose There is limited research examining symptom trajectory and management outcomes of patients with Postural Orthostatic Tachycardia Syndrome (POTS). Here we aim to determine 12-month outcomes following multidisciplinary care in this cohort. Methods Consecutive participants aged 16 years and older with physician confirmed POTS who had enrolled in a national POTS registry between May 2021 and April 2024, were included. Participants had attended a nurse-led multidisciplinary assessment with a cardiologist or primary care practitioner, followed by appointments with medical, nursing and exercise physiology professionals as clinically indicated. Treatment consisted of lifestyle modifications and pharmacotherapy as per international consensus. Patient reported outcome measures were collected at baseline and 12-month follow-up, to quantify autonomic symptom burden (Composite Autonomic Symptom Score; COMPASS-31), fatigue (Fatigue Severity Scale; FSS-9) and health-related quality-of-life [HrQoL: EuroQoL 5D-5L; EQ-Visual Analogue Scale (EQ-VAS) and EQ-Utility Score]. Changes over follow-up in employment and social engagement were also determined. Paired t-tests, Wilcoxon's rank tests and McNemar's tests were used for comparing outcome measures across follow-up, as appropriate. Results A total of 303 participants were included; 89.1% female; median age of 30 years (IQR 23.0–40.0). Overall autonomic symptom burden improved significantly over the follow-up period (COMPASS-31 total score 48.34 ± 13.67 vs. 45.79 ± 15.27, p < 0.001; Figure 1), which was driven by improvement in orthostatic intolerance [Median OI score 28.0 (IQR 24.0–32.0) vs. 24.0 (IQR 16.0–28.0), p < 0.001; Figure 1]. Vasomotor, secretomotor, gastrointestinal and bladder function all worsened significantly (p < 0.05; Figure 1), whilst there was no change in clinically severe fatigue (FSS-9 > 36; 90.9 vs. 90.1%, p = 0.85). There were no changes in the EQ-VAS [median 40 (IQR 30–65) vs. 50 (IQR 30–68), p = 0.12] or EQ-utility scores [median 0.71 (IQR 0.46–0.85) vs. 0.74 (IQR 0.43–0.86), p = 0.58], indicating that at both time points HrQoL was considerably poor, and well below that of a normative population. At follow-up participants were more likely to be unemployed or on government benefits (27.1 vs. 19.1%, p = 0.003), with no change in social engagement (45.2 vs. 39.9%, p = 0.12). Conclusion Following multidisciplinary care, our cohort demonstrated improvement in orthostatic intolerance and overall autonomic symptoms, but worsening of extra-cardiac symptom burden. There is urgency to understand mechanisms to improve broader autonomic symptom burden and quality-of-life. Further research is needed to examine specific interventions within the multidisciplinary model and explore further impacts of collaborative care.