Abstract 346: The Lived Experience of Patients with Fibromuscular Dysplasia

Background: Fibromuscular dysplasia (FMD) is a non-atherosclerotic, non-inflammatory vascular disorder that may lead to stenosis, beading, aneurysm, and dissection of affected arteries. Although considered a rare disease, recent studies suggest that FMD may be more prevalent than once thought. Common clinical presentations include hypertension, headache, fatigue, and pulsatile tinnitus. Understanding what it is like to have FMD and the unique concerns and challenges of FMD patients is crucial to providing quality care, yet little work has been done to address these issues. The purpose of this study is to illuminate the lived experience of being diagnosed and living with FMD. Methods: A qualitative approach was used to conduct in-depth interviews with a convenience sample of 21 individuals with FMD. Interviews were conducted using a semi-structured interview guide with open-ended questions and audio-recorded. Recordings were transcribed verbatim. Transcripts were coded and analyzed using conventional content analysis to identify patterns and themes within and across interviews. Participants were further categorized as High, Medium or Low Functioning based on their reported level of disability and capacity to work and perform daily activities. Results: The average age of participants was 53.7 years. All were Caucasian, one was male, and more than 90% were married (Table 1). Equal numbers of patients were represented in each level of functioning, but this occurred by chance. Participants report a complex array of physical (fatigue, pain, pulsatile tinnitus), psychological (anxiety, depression), and social (intimacy, disability) challenges that impact their quality of life. At times, they experience healthcare providers as dismissive and having insufficient knowledge about FMD. Patient-identified opportunities to improve FMD care include increasing providers’ knowledge of FMD, and incorporating holistic care (for body, mind, emotions) into treatment plans. Conclusion: Using a qualitative approach to study the lived experiences of patients with FMD resulted in a more thorough understanding of the concerns and challenges they face. Results may prompt discussion about assisting providers in becoming more knowledgeable about FMD and opportunities to include holistic care in the treatment of FMD. ![][1] [1]: /embed/graphic-1.gif