STAND UP to POTS: A Qualitative Study of Determinants of Access to Effective Care for Postural Orthostatic Tachycardia Syndrome

<strong>Background:</strong><span style="font-weight: 400;"> Postural Orthostatic Tachycardia Syndrome (POTS) affects 1-3 million Americans, causing heart palpitations, extreme fatigue, fainting, gastrointestinal problems, and other multisystem symptoms. Existing literature shows patients face diagnostic delays, dismissal from providers, and frequent misdiagnoses when attempting to receive care.&nbsp; However, a holistic understanding of the determinants to receiving a diagnosis and effective care for POTS has not been researched.</span> <strong>Methods: </strong><span style="font-weight: 400;">Participants were recruited using a flyer posted in Facebook support groups for POTS, screened via survey, and then interviewed via Zoom for 30-60 minutes. Iterative coding was performed and the socio-ecological model was used to organize the results.</span> <strong>Results: </strong><span style="font-weight: 400;">22 participants&rsquo; experiences revealed determinants to effective care spanning all levels of&nbsp; the socio-ecological model. Barriers included inaccessibility to effective care, low awareness of POTS in both the medical and broader community, and frequent occurrence of iatrogenic harm. Facilitators included: pre-existing support systems, online communities, and a growing body of expert patients.</span> <strong>Conclusions: </strong><span style="font-weight: 400;">Participants underscored the need for</span><strong> </strong><span style="font-weight: 400;">compassionate providers who listen to their patients and help them understand an illness that can at times be &ldquo;invisible.&rdquo; Compassion leads to patient-centered care, a minimization of iatrogenic harm, and increases the support available to participants by increasing their autonomy.&nbsp;</span>