ABSTRACT
Background: The Familial Mediterranean Fever (FMF) Program at the University of California, Los Angeles is the only dedicated FMF diagnostic and treatment clinic in the United States, receiving global referrals. FMF is a rare autosomal recessive genetic disorder characterized by recurrent febrile polyserositis. Serious complications from untreated FMF are easily preventable with early diagnosis and treatment. The COVID-19 pandemic constrained educational and interdisciplinary in-person visits and prompted exploration of innovative telehealth solutions. Objective: This study aimed to explore the feasibility and clinical process outcomes associated with a multidisciplinary telemedicine model to deliver consultative and continuing care to FMF patients. Our secondary objectives included assessing provider, patient, and trainee satisfaction. Study design: We implemented a multidisciplinary telemedicine clinic with gastroenterologists, a medical geneticist, and trainees. All patients with suspected FMF referred to our clinic during the pandemic were included. Patients were sent a HIPAAcompliant Zoom link for their clinic appointment. We mirrored our in-person academic teaching model, first with the trainee interviewing the patient virtually and then later presenting to the team, along with family members, who joined for the case presentation and consensus on diagnostic impressions and management recommendations. Patient characteristics and clinical process outcomes were assessed during the visit and from the electronic medical record (EMR). Post-visit surveys of patients, physicians and trainees were then taken to assess effectiveness and desirability of the approach. Results: 86 patients were enrolled in the multidisciplinary telemedicine model from March 2020 to March 2021. In comparison, 87 pre-pandemic visits occurred between March 2019 to March 2020. No significant difference was found in patient volume seen with telehealth and surveys showed increased provider, patient, and trainee satisfaction. The telehealth model enabled health care delivery to a variety of locations that lacked expert experience with this rare disease. Patients could also avoid costly travel to UCLA and risk exposure to COVID-19. Surveys showed increased satisfaction with Zoom than the integrated video functionality in our in-house EMR by allowing for inclusion of multiple specialists and interested family members. Sample collection for indicated laboratory tests could still be ordered at a local phlebotomy center. Conclusion: A multidisciplinary telemedicine model for outpatient management of FMF patients resulted in rates of ambulatory management similar to those seen pre-pandemic and resulted in improved patient and physician satisfaction. FMF is especially amendable to this approach, as patients are asymptomatic between attacks, making hands-on physical exam less pertinent.