Document Type

DNP Project

Department

School of Nursing

Date of Degree

Spring 2025

Degree

Doctor of Nursing Practice (DNP)

Primary Advisor

Dr. Cara Padovano, DNP, APRN

Keywords

Postural Orthostatic Tachycardia Syndrome, Patient Self-Advocacy; Patient Education

Abstract

Background: Postural Orthostatic Tachycardia Syndrome (POTS) is a common form of dysautonomia that affects millions of individuals in the United States and internationally. Approximately 50% of POTS cases involve a “trigger” in the form of a viral infection. The incidence of POTS has drastically increased secondary to COVID-19 initial infections and re- infections. Research has shown that patients with POTS have a quality of life similar to patients living with congestive heart failure. Poor provider education and diagnostic delays contribute to poor quality of life and elevated suicide rates.

Objective: This project aims to educate POTS patients so they have the skills needed to advocate for themselves. Improved self-advocacy outcomes included: illness education, mindful non-adherence, perceived assertiveness, and self-advocacy skills. Measurements compared pre- test and post-test results.

Methods: A virtual self-paced educational program was developed for individuals diagnosed with POTS through the organization, Awareness for POTSies. Individuals meeting the eligibility criteria completed 5 online modules, through TalentLMS, that provided supportive and tailored education specific to POTS, general self-advocacy skills, self-advocacy in medical environments, and self-advocacy in relationships. Data was collected using PSAS pre- and post- surveys and a qualitative post-survey.

Results: Twenty six patients completed the program. Statistically significant improvements were seen for all PSAS sections when comparing mean pre-survey and post-survey results for all participants using a paired t-test and descriptive statistics. Post-program qualitative data relied on sentiment and thematic analyses. The majority of sentiment analysis responses were positive.

Conclusion: Awareness for POTSies supports tens of thousands of patients internationally who are living with POTS and other co-occurring conditions. After reviewing the results, the benefits are clear. There are opportunities for the development of more educational programs for this patient population, and for similar educational programs tailored to patients living with other chronic conditions.

Open Access

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