EmpowerPOTS: Enhancing Self-Advocacy and Knowledge for Better Outcomes

Date

2024

Authors

Albro, Leila

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Abstract

Postural orthostatic tachycardia syndrome (POTS) is a form of autonomic nervous system dysfunction that presents with symptoms related to orthostatic intolerance that impact quality of life, occupational participation, and occupational performance. POTS has a high symptom burden, is often discredited, and has limited evidence-based interventions. Through an extensive literature review, needs assessment, and collaboration with stakeholders, it was discovered that educating patients on their diagnosis, as well as training them on how to advocate for their needs, will allow them to have informed expectation for their care and take an active role in their treatment. Comprehensive resources including an educational handout, a self-advocacy resource bank, and a recorded educational seminar were developed based on this discovery. The outcomes measures of the resources have demonstrated positive responses from stakeholders, including individuals with POTS, healthcare providers, and content experts. Feedback on the resources highlighted their clarity, usefulness, and potential to improve knowledge and self-advocacy skills among the target population. These resources can be provided to patients to increase knowledge and self-advocacy skills, thereby improving long-term health outcomes. In addition, bringing these resources to the attention of healthcare providers will not only enable them to become knowledgeable about POTS themselves but also encourage them to support their patients' self-advocacy efforts. All capstone resources may also serve as a starting point for occupational therapists to begin implementing self-advocacy interventions when treating patients with POTS, and ideally empower occupational therapists to feel more comfortable treating this patient population.

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Keywords

POTS, Postural Orthostatic Tachycardia Syndrome, Self-advocacy, Occupational therapy

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