ABSTRACT
Background: Filter paper (FP) or dried blood spot testing is the preferred method of monitoring blood levels of phenylalanine and tyrosine for patients diagnosed with phenylketonuria (PKU) in the state of Georgia. This cost effective and convenient at-home approach simplifies the nutritional assessment and management of patients with PKU and lessens the burden on patients and caretakers. Emory and a local specialty laboratory had a long-standing contract for FP testing, which included patient insurance and grant billing. When this laboratory abruptly ended FP testing in September 2020, an emergent alternative plan became essential to prevent potential disruptions in patient care while working on a sustainable solution for PKU monitoring, especially given the ongoing COVID-19 pandemic. Method(s): Emory's in-house laboratory was not contracted with outside laboratories to process FP testing and bill insurance. To mitigate any delays in FP testing, the MNT4P program conducted a vendor search and selected ARUP Laboratories to perform PKU FP testing. Eligible patients included those referred, enrolled, and consented to the MNT4P program. To streamline the FP submission process, customized FP cards and business reply envelopes were developed and distributed in collaboration with PerkinElmer, Emory Mail Services and the United States Postal Service. Patient outreach efforts were facilitated through email campaigns, MNT4P website updates, and in collaboration with Georgia PKU Connect. Result(s): 95 patients were referred to MNT4P program for FP paper monitoring. During the 4-month period, a total of 239 FPs were collected from patients with PKU and processed with corresponding results reported to Emory Clinic, allowing registered dietitians to continue nutrition management without disruption. Once the patient-centered business prototype was established, FP testing was successfully transferred from the MNT4P program to Emory's inhouse laboratory. FP testing is now a part of Emory's test catalog, and results are available to providers through electronic health records. Conclusion(s): The MNT4P program successfully worked with Emory's in-house laboratory to develop a sustainable solution for FP monitoring. It prevented interruption in long-term follow up of patients with PKU. MNT4P continues to be the payor of FP tests for uninsured and underinsured patients.Copyright © 2022 Elsevier Inc. All rights reserved.
ABSTRACT
Objective: To investigate the patient experience of telemedicine for headache care during the COVID-19 pandemic. Background: The use of telemedicine has rapidly expanded and evolved since the beginning of the COVID-19 pandemic. However, few studies have assessed the patient perspective of telemedicine for headache care. Design/Methods: The American Migraine Foundation (AMF) designed a standardized electronic questionnaire to assess the patient experience of telemedicine for headache care between March and September 2020. The questionnaire was distributed electronically to more than 100,000 members of the AMF community through social media platforms and the AMF email database. Results: 1172 patients responded to our electronic questionnaire, with 1098 complete responses. 648/1127 (57.5%) patients reported that they had used telemedicine for headache care during the study period. Among those who participated in telehealth visits, 553/647 (85.5%) patients used it for follow-up visits;94/647 (14.5%) patients used it for new patient visits. During the telemedicine encounters, patients were evaluated by headache specialists, general neurologists, primary care providers, and headache nurse practitioners. Only 47/633 (7.4%) patients received a new headache diagnosis from telemedicine evaluation, whereas 586/633 (92.6%) patients did not have a change in their diagnoses. During these visits, a new treatment was prescribed for 358/636 (52.3%) patients, whereas 278/636 (43.7%) patients did not. The number (%) of patients who rated the telemedicine headache care experience as “very good,” “good,” “fair,” “poor,” and “other” were 396/638 (62.1%), 132/638 (20.7%), 67/638 (10.5%), 23/638 (3.6%), and 20/638 (3.1%), respectively. Most patients, 573/638 (89.8%), indicated that they would prefer to continue to use telemedicine for their headache care. Conclusions: Our study evaluating the patient perspective demonstrated that telemedicine facilitated headache care for many patients during the COVID-19 pandemic, resulting in high patient satisfaction rates, and a desire to continue to use telemedicine for future headache care among those who completed the online survey.