Amyloidosis is a group of rare diseases characterized by insoluble, extracellular protein (amyloid) deposition in various organs leading to organ dysfunction and failure. A total of 36 amyloidogenic proteins have been identified; 17 of these may go on to cause systemic amyloidosis. The types of amyloidosis vary greatly in clinical presentation, phenotype, and treatment depending on the underlying precursor protein. Due to the multiple types of amyloidosis and the complexity of this multi-system disease, accurate diagnosis, including typing of the precursor protein, is imperative to offer correct treatments.
However, the health care climate does not always allow for the extensive evaluation these patients require. Lousada et al noted in an initial survey of 533 participants, 37% had no established diagnosis 1 year after the initial onset of symptoms. Current research proves allocation of physicians’ time is a significant concern in health care, where increasing time pressures in the health care system leads to reduced direct face time with patients during clinic visits. The limited time and attention is perceived to impact patients’ quality of care and provider professional satisfaction as a result.
In a bid to improve clinical outcomes and experience for all members of the health care continuum, the use of virtual care has continued to grow. Moreover, the global impact of the COVID-19 pandemic has only bolstered the use of virtual care further. Using telehealth appointments and virtual software platforms, technology has been critical in allowing providers to continue to deliver high-quality equitable care, while reducing risk of exposure for both patients and providers. The pandemic has acted as a catalyst in leveraging and employing approachable technology to improve our clinical setting on a much larger scale.
The Amyloidosis Appointment Companion (Companion) is a secure, user-friendly website application specifically for amyloidosis patients and their treating physicians. Companion was designed and created by Patient Discovery Solutions in conjunction with the Amyloidosis Research Consortium, a nonprofit organization focused on accelerating the development of novel treatments and developing tools to capture and better understand the experiences of patients living with amyloidosis. This application allows patients to self-report on any changes in their condition, personal goals of care, and challenges they may be facing during the management of their chronic disease. These patient-identified medical and nonmedical issues are then collated and shared with their health care providers ahead of any upcoming appointments.
The Boston University Amyloidosis Center evaluates and treats all types of amyloidosis in its multidisciplinary clinic at Boston Medical Center. To evaluate the feasibility of using Companion in a clinical setting, Boston University Amyloidosis Center integrated the health care application into the clinical workflow for amyloidosis patients with both telehealth and in-person appointments. Investigating the utility of the virtual platform and its impact on communication of real-world needs, goals, and preferences was measured via patient engagement and provider satisfaction.