Background: Fibromuscular dysplasia (FMD) is a polyvascular disorder that may result in narrowing, aneurysm, or dissection of affected arteries. A recent qualitative study illuminated common themes relative to being diagnosed and living with FMD. This study sought to quantitatively explore these themes in a larger sample.
Methods: Patients from a single site in the US Registry for FMD (USRFMD) were eligible to participate. Subjects received an initial survey packet and up to two reminders between July and September 2015; surveys were returned via U.S. mail or online. Surveys were linked to the USRFMD database, from which clinical data was drawn. The survey included valid and reliable instruments including the Patient Health Questionnaire (PHQ) 9, PHQ-15, and the Generalized Anxiety Disorder Questionnaire.
Results: Of 91 surveys mailed, 72 were completed (79.1%). Most respondents were female (94.4%, n=68) and white (97.2%, n=70), with a mean age at diagnosis of 52.7 ± 11.9 years and had been living with FMD for a mean of 9.7 ± 8.1 years. Medical history did not differ significantly between participants and non-participants. Screening showed that 21.7% of patients experienced moderate depression, 40.7% experienced significant physical symptoms, and 10.4% experienced moderate generalized anxiety. Though not statistically significant, there was a trend towards reduced mental health symptoms over time (Figure 1) and higher symptomatology with treatment delays of 1-5 years (data not shown). No differences were found in mental health based on number or location of vessels affected by FMD. Patients who had experienced an adverse event (e.g. stroke, TIA, MI, dissection, renal infarction, mesenteric ischemia) reported more physical symptoms (57.1% v. 23.1%, p=.014).
Conclusion: Among patients from a single center participating in the USRFMD, rates of anxiety and depression are nearly double that of the general population. Trends indicate that depression, physical symptoms, and anxiety may decrease over time. Given the higher rates of anxiety, depression, and somatoform symptoms compared to the general population, greater efforts are needed to make earlier diagnoses and support patients, particularly in the early stages post-diagnosis.