On SAGE Insight: Diagnosed and living with fibromuscular dysplasia

Article title: Diagnosed and living with fibromuscular dysplasia: A qualitative inquiry

From Vascular Medicine

Fibromuscular dysplasia (FMD) is a vascular disorder about which little has been known until recently. Prior to the organization of the United States Registry for Fibromuscular Dysplasia 2009, research on FMD was limited. The registry has inspired further registry-based research efforts around the world. Indeed, though little is known about the cause or prevalence of FMD a great deal has been learned about the vascular sites most commonly affected, variations in disease presentation, and patient outcomes. The goal of this study is to add to the growing body of knowledge about the experiences of being diagnosed and living with FMD. To the best knowledge of the researchers, this study is the first to identify and characterize the experiences of people living with FMD, from their perspectives, using a qualitative approach. Findings reveal a complex array of experiences related to symptom burden, worries and concerns, health care services, loss and change, and resilience. These themes represent new knowledge about the psychosocial dimensions of FMD and suggest opportunities for enhancing patient care.

Abstract

Fibromuscular dysplasia (FMD) is a vascular disorder about which little has been known until recently. Patients with FMD may suffer from hypertension, aneurysms, or strokes, as well as symptoms associated with local artery damage. As a result of advances in vascular medicine and growing outcomes registries, we now have a better understanding of the FMD disease process and epidemiology. Nevertheless, the consequences of FMD on patients’ day-to-day experiences and mental health status are not well understood. The purpose of this study was to begin to identify and characterize the experiences of living with FMD from the perspective of the patient using qualitative inquiry. Interviews with 19 FMD patients (18 female, 1 male) were conducted, audio-recorded, transcribed verbatim, and content analyzed. Individuals with FMD reported a complex array of psychological, physical, emotional, social, and health care concerns, which may be underdiagnosed. Findings suggest new opportunities for enhancing patient care.

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Article details
Sherry M Bumpus, Christa Kuck, Steven T Heidt, and Minnie Bluh
Diagnosed and living with fibromuscular dysplasia: A qualitative inquiry
Vasc Med 1358863X16668419, first published on October 6, 2016 doi:10.1177/1358863X16668419

 

     
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