Background—
Arrhythmogenic right ventricular dysplasia/cardiomyopathy (ARVD/C) is a progressive cardiomyopathy. We aimed to define long-term outcome in a transatlantic cohort of 1001 individuals.
Methods and Results—
Clinical and genetic characteristics and follow-up data of ARVD/C index-patients (n=439, fulfilling of 2010 criteria in all) and family members (n=562) were assessed. Mutations were identified in 276 index-patients (63%). Index-patients presented predominantly with sustained ventricular arrhythmias (268; 61%). During a median follow-up of 7 years, 301 of the 416 index-patients presenting alive (72%) experienced sustained ventricular arrhythmias. Sudden cardiac death during follow-up occurred more frequently among index-patients without an implantable cardioverter-defibrillator (10/63, 16% versus 2/335, 0.6%). Overall, cardiac mortality and the need for cardiac transplantation were low (6% and 4%, respectively). Clinical characteristics and outcomes were similar in index-patients with and without mutations, as well as in those with familial and nonfamilial ARVD/C. ARVD/C was diagnosed in 207 family members (37%). Symptoms at first evaluation correlated with disease expression. Family members with mutations were more likely to meet Task Force Criteria for ARVD/C (40% versus 18%), experience sustained ventricular arrhythmias (11% versus 1%), and die from a cardiac cause (2% versus 0%) than family members without mutations.
Conclusions—
Long-term outcome was favorable in diagnosed and treated ARVD/C index-patients and family members. Outcome in index-patients was modulated by implantable cardioverter-defibrillator implantation, but not by mutation status and familial background of disease. One third of family members developed ARVD/C. Outcome in family members was determined by symptoms at first evaluation and mutations.
A unique and sudden need for virtual medical visits created by the coronavirus disease 2019 (COVID-19) pandemic has led to an unprecedented expansion of telemedicine across nearly all medical specialties in the United States. In addition to providing essential medical services during the pandemic, telemedicine has the potential to expand health care access to underserved populations by eliminating traditional barriers to care such as transportation needs, distance from specialty providers, and approved time off from work. However, the literature regarding telehealth accessibility for low-income, non-English-speaking, and minority patients remains limited. Through a cross-sectional analysis comparing 2019 clinic visits with 2020 telehealth visits at the UMass Memorial Medical Center, we demonstrate specialty-specific changes in patient demographics, including a younger population, fewer non-English-speaking patients, and a relative preservation of minority, Medicaid, and Medicare patients among telehealth visits in comparison to clinic visits. We also demonstrate that nonsurgical specialties had significantly lower no-show rates and the greatest number of telehealth visits. Overall, our findings highlight the potential shortcomings of telemedicine in servicing non-English-speaking patients, while maintaining that it is an important tool with the potential to improve access to health care, particularly in nonprocedural specialties.
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