Abstract
The clinical management of patients with inherited metabolic disorders (IMDs) includes medical nutrition therapy (MNT) by a registered dietitian (RD). We utilized an online quantitative and qualitative survey to characterize the practices of RDs treating patients with IMDs during the COVID-19 pandemic and to identify challenges and unmet needs. We received responses from 117 RDs. Results indicate that RDs are using alternate methods to engage this vulnerable population and provide MNT during the pandemic, including offering telemedicine appointments. Barriers to implementation of telemedicine include the limitations of virtual visits (inability to conduct physical exams and collect blood samples), time, patient knowledge of technology, audio problems, and patient access to internet, computers, or smartphones. RDs have addressed these barriers by extending prescriptions without a medical exam, relying on local facilities for blood draws, increasing the number of patients that use at-home filter papers for blood monitoring, and expanding the use of phone calls and emails. RDs identified patient education materials to facilitate telemedicine visits as a primary unmet need. Despite the reported barriers and limitations of telemedicine for MNT of IMDs, there was widespread satisfaction with the approach among RDs, with 96.9% reporting that they were somewhat or very satisfied with telemedicine. Although this survey focused on barriers, benefits of telemedicine for both RDs and patients were also reported. Identification of barriers and unmet needs can help clinics plan strategies to maximize telemedicine delivery models, to improve efficiency and patient outcomes, and to support sustained use of telemedicine post-pandemic.
Highlights
The COVID-19 pandemic is an unprecedented global public health emergency
In the United States, the first statewide stay-at-home order was put in place on March 19, 2020 [14]
registered dietitian (RD) reported a large increase in the number of patients seen via telemedicine in response to the COVID-19 pandemic, along with increased use of telephone and email communications
Summary
The COVID-19 pandemic is an unprecedented global public health emergency. One of the major strategies to decrease transmission of the SARS-CoV-2 virus is the implementation of social distancing, and in some cases community stay-at-home orders. Any disruptions to care of patients with IMDs, including lack of access to medical foods or MNT, can lead to cognitive impairment, coma, or death, depending on the IMD. Telemedicine is a potential strategy to improve access to care for patients with IMDs during the COVID-19 pandemic and after [4,5,6]. If labs were collected and results are available prior to the nutrition telemedicine visit, the results are reviewed with the patient and/or guardian. We conducted a cross-sectional survey of RDs managing patients with IMDs during the COVID-19 pandemic The aim of this survey was to characterize management strategies in the time of COVID-19, identify challenges in implementing telemedicine for managing patients with IMDs, and discuss potential solutions. Identification of barriers and successes can inform the feasibility of creating and/or sustaining telemedicine programs post-pandemic
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