Patient Experience of Telemedicine for Headache Care During the COVID-19 Pandemic

An American Migraine Foundation Survey Study

Chia-Chun Chiang MD; Rashmi Halker Singh MD; Nim Lalvani MPH; Ken Shubin Stein MD, MPH, MS, CPH, CFA; Deborah Henscheid Lorenz JD; Christine Lay MD; David W. Dodick MD; Lawrence C. Newman MD


Headache. 2021;61(5):734-739. 

In This Article

Abstract and Introduction


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.


The coronavirus disease 2019 (COVID-19) pandemic has significantly affected the delivery of health care. In March 2020, many health-care institutions in the United States canceled elective, nonurgent clinics and procedures in response to this public health emergency. As a result, routine outpatient and procedural headache care were interrupted. Telemedicine, a real-time interactive video and audio remote communication between a patient and a clinician, was quickly implemented and rapidly evolved. Telemedicine has now become essential for health-care professionals and patients to deliver and receive care in a socially distanced way that minimizes the geographic and physical barriers, preserves personal protective equipment, and prevents the spread of COVID-19.

Even before the pandemic, there existed a need to expand telemedicine in neurology. In 2019, the American Academy of Neurology Telemedicine Work group provided an overview of the use of telemedicine among different subspecialties, including headache medicine, highlighting the growing evidence to support the use of telemedicine.[1] Indeed, prospective, randomized trials have demonstrated noninferiority, convenience, and patient satisfaction for the use of telemedicine in the evaluation and treatment of headache disorders compared with traditional in-person evaluations.[2] However, the studies were limited by small sample sizes, and only a few studies have directly assessed patient satisfaction in the clinical trials.[3] Large-scale data evaluating the perspective of patients on their experience with and perceived value of telemedicine for headache care are lacking.

The American Migraine Foundation (AMF) is a nonprofit organization dedicated to the advancement of research and awareness surrounding migraine, a neurological disorder that affects 12% of Americans and is the second leading cause of years lived with disability worldwide and the first among young women.[4] Migraine is also the third most burdensome neurological disorder in terms of disability-adjusted 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.