key: cord-1048647-t9w0au4s
authors: Chiang, Chia‐Chun; Halker Singh, Rashmi; Lalvani, Nim; Shubin Stein, Ken; Henscheid Lorenz, Deborah; Lay, Christine; Dodick, David W.; Newman, Lawrence C.
title: Patient experience of telemedicine for headache care during the COVID‐19 pandemic: An American Migraine Foundation survey study
date: 2021-05-21
journal: Headache
DOI: 10.1111/head.14110
sha: d2b14c5bbbcc55efa85bf81bae9b8b66a09b61f8
doc_id: 1048647
cord_uid: t9w0au4s

OBJECTIVE: We sought to investigate the patient experience of telemedicine for headache care during the coronavirus disease 2019 (COVID‐19) pandemic. BACKGROUND: The use of telemedicine has rapidly expanded and evolved since the beginning of the COVID‐19 pandemic. Telemedicine eliminates the physical and geographic barriers to health care, preserves personal protective equipment, and prevents the spread of COVID‐19 by allowing encounters to happen in a socially distanced way. However, few studies have assessed the patient perspective of telemedicine for headache care. 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 to help inform future quality improvement as part of its patient advocacy initiative. The date parameters were identified as the emergence of severe acute respiratory syndrome coronavirus 2 disease and the declaration of a national emergency in the United States. 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: A total of 1172 patients responded to our electronic questionnaire, with 1098 complete responses. The majority, 1081/1153 (93.8%) patients, had a previous headache diagnosis prior to the telemedicine encounter. A total of 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, 282/645 (43.7%) patients were evaluated by headache specialists, 222/645 (34.4%) patients by general neurologists, 198/645 (30.7%) patients by primary care providers, 73/645 (11.3%) patients by headache nurse practitioners, and 21/645 (3.2%) patients by headache nurses. Only 47/633 (7.4%) patients received a new headache diagnosis from telemedicine evaluation, whereas the other 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 have changes made to their treatment plan. 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. Detailed reasons for “other” are listed in the manuscript. Most patients, 573/638 (89.8%), indicated that they would prefer to continue to use telemedicine for their headache care, 45/638 (7.1%) patients would not, and 20/638 (3.1%) patients were unsure. 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.

ity worldwide and the first among young women. 4 Migraine is also the third most burdensome neurological disorder in terms of disabilityadjusted life years in the United States. 5 The organization was founded in 2010 to provide and increase global access to resources for individuals with migraine and other headache disorders. Given the significant disability and disease burden of headache disorders, every effort should be extended to improve access to care, especially in the context of a global pandemic. The purpose of this study was to present the patient perspective of telemedicine for headache care during the COVID-19 pandemic, and to report the patient preference to continue to use telemedicine by analyzing and summarizing the results of an online electronic survey conducted by the AMF as part of the quality improvement initiative to insure that patient advocacy needs are met.

The AMF leadership designed an electronic questionnaire surveying patient experiences of telehealth for headache care during the COVID-19 pandemic to promote patient advocacy and quality improvement of headache care. The questionnaire included 15 standardized questions, two of which had logic applied for deeper answer identification. The questionnaire sought patient response for the details of telemedicine encounters and whether patients had used telemedicine for their headache care between March and September 2020. The date parameters were selected based on the emergence of severe acute respiratory syndrome coronavirus 2 disease and the emergency declaration made in the United States.

Details of the telemedicine encounters asked included the provider types, whether new diagnosis or therapies were given, overall satisfaction, and the desire to use telemedicine going forward. A copy of the electronic questionnaire is included as Supporting Information.

The questionnaire was developed in and collected through SurveyMonkey, Inc. Respondents were not allowed to submit whereas the other 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 have changes made to their treatment plan.

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. Detailed reasons for "other" are listed in the manuscript. Most patients, 573/638 (89.8%), indicated that they would prefer to continue to use telemedicine for their headache care, 45/638 (7.1%) patients would not, and 20/638 (3.1%) patients were unsure.

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.

coronavirus disease 2019, migraine, patient perspective, patient satisfaction, telehealth, telemedicine multiple responses to avoid duplicate data entry. Participants were not required to enter their name, age, or any personal information to maintain anonymity. The survey was an open survey that did not require participants to enter any passwords. The survey was completed voluntarily and no incentives were offered.

The questionnaire was distributed electronically on AMF channels that were identified as having the largest potential reach. The channels included AMF's private patient support community of 26,000 patients (Facebook) and its email contact database of 80,000 contacts. The survey was open on these channels for 18 days and yielded 1172 responses.

After the results of the survey were collected by AMF, deidentified, aggregated results were sent to the researchers (CC and RHS) for further generalizable analysis. The data are not identifiable to an individual and provide no connection or access to any medical records or protected health information of any individual.

Institutional Review Board (IRB) approval and informed consent were not required for analysis of aggregated results, as per discussion with Mayo Clinic IRB regarding study design and details.

Patient responses were entered directly into a SurveyMonkey electronic questionnaire. The different answers/checkboxes to each question were summed up automatically by the SurveyMonkey software and exported to Excel. Answers to each question in the survey were presented in percentage based on the number of participants who chose the particular answer divided by the total number of participants who answered the question. No additional statistical analysis was performed.

We did not perform power analysis to calculate sample size, but a target accrual of 1000 responses were felt to be sufficient by the authors to represent the experiences and opinion of patients active in the above mentioned social media channels. All results were primary analysis of the data obtained directly from the electronic questionnaire. No secondary or post hoc analyses were performed. The results of this manuscript have not been published elsewhere.

A total of 1172 participants responded to our questionnaire, with 1098 complete responses. As all the 1172 participants answered at least one question in the survey, we chose to include all the survey responses. Missing data to each question are outlined in Table 1 .

Among them, 1017/1172 (86.8%) were female, and 138/1172 (11.8%) were male, 7 patients chose "nonbinary," and 10 patients preferred not to disclose. The average age was 49. 5 In terms of patient satisfaction of the telemedicine visits, the number (%) of patients who rated the experience using telehealth/ telemedicine for their headache disorder care "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 ( Figure 1 ). Out of the 648 patients, 10 patients did not answer the question. Comments put in "other" included the following:

"OnabotulinumtoxinA was not available due to no face-to-face visit,"

"Difficult, just got a referral and put on a wait list," "There were connectivity issues so ultimately had to do the visit by phone," "I'm hard of hearing, need to see provider face-to-face," and "The Doctor was very professional and attentive to concerns, but I think it's difficult to truly convey your true symptoms via a screen." When asked, "Would you continue to use telehealth/telemedicine visits for your headache disorder care and treatment?" 286/638 (44.8%) patients answered "yes," 287/638 (45.0%) patients indicated "yes, but not for all visits," 45/638 (7.1%) patients said "no," and 20/638 (3.1%) patients were unsure ( Figure 1 ). There are limitations to point out with this study. Ascertainment bias needs to be considered, given that our survey respondents were motivated individuals who were already engaged with AMF. As the survey was distributed electronically, both through Facebook and the AMF email database, participants were those who were comfortable with online services and had internet access. The COVID-19 pandemic has highlighted that reliable internet service has contributed to disparities in access in many ways, and health care via telemedicine has been one of those key areas that has been affected. Those who are not able to afford internet, lack proficiency in the use of technology, or have cognitive impairment might not be able to use telemedicine. Our study also had a comparatively small sample size-although a total of 106,000 individuals were invited to participate (26,000 from the Facebook group and 80,000 from the AMF email list), we received responses from 1172 people within 18 days, or 1.11% of the invited population. Although we heard from many patients, there are many more whose experiences were consequently not included.

Regardless, the importance from the patient viewpoint of having access to telemedicine services was made clear by our survey respondents, as the overwhelming majority of those who responded to the survey, over 89%, asserted they would like to have this option remain in place going forward. Our survey also revealed several barriers to care, which should be addressed to optimize the experience for patients. Out of the 44% of patients in our survey who did not use telemedicine services but did have a need to see a clinician, their reasons ranged from not knowing this was a choice, to not being offered a telemedicine appointment, to not having this option covered by insurance, or to not having adequate access to internet. We can address these challenges and improve our ability to provide care to patients by taking a few specific steps. First, by prioritizing the best interests of our patients, we need insurance companies to expand coverage and continue to reimburse telemedicine, even after the pandemic. This is a necessary measure to improve access to care. Second, as many patients in our study commented that they were unaware of this service, it is important to widely promote and broadcast the use of telemedicine as an established part of outpatient clinical medicine. Finally, this service is unfortunately limited to those who have reliable internet service. As we look at life beyond the COVID-19 pandemic and addressing disparities, it is important to consider internet access as a necessity. As a society, we should do what we can to help expand internet service more broadly across the United States with these perspectives in mind.

As a devoted patient advocacy group, the AMF also calls upon health-care insurance providers to continue the reimbursement

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Acquisition of data

Analysis and interpretation of data

Final approval of the completed manuscript

Telemedicine in neurology: Telemedicine Work Group of the American Academy of Neurology update

A randomized trial of telemedicine for migraine management

Headache patients' satisfaction with telemedicine: a 12-month follow-up randomized noninferiority trial

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Burden of neurological disorders across the US from 1990-2017

A randomized trial of telemedicine efficacy and safety for nonacute headaches

Migraine care in the era of COVID-19: clinical pearls and plea to insurers