Abstract
Telehealth remains understudied in patients with eosinophilic esophagitis (EoE) and eosinophilic gastrointestinal diseases (EGIDs), yet may serve as an important tool for increasing access to providers with EGID-specific expertise. The online patient-centered research network, EGID Partners, provided insight into EGID-related telehealth utilization. Respondents reported that telehealth visits offered the ability to spend adequate time with their healthcare provider and communicate just as effectively as an in-person visit, while also incurring lower travel-related costs and less missed work or school. Here, we provide lessons learned that telehealth can be an effective, acceptable, and feasible method of delivering care to EGID patients.
Keywords: eosinophilic esophagitis, eosinophilic gastrointestinal diseases, telehealth, cost, survey
Eosinophilic gastrointestinal diseases and the role of telehealth
Eosinophilic gastrointestinal diseases (EGIDs) are defined by pathologic infiltration of eosinophils and related allergic and inflammatory cells into the GI tract in the absence of secondary causes.1 Symptoms are typically related to the area of involvement in the GI tract, and the individual conditions are accordingly named by the area of involvement.2 While eosinophilic esophagitis (EoE) has been rapidly increasing in prevalence, the non-EoE EGIDs such as eosinophilic gastritis (EoG), eosinophilic enteritis (EoN), and eosinophilic colitis (EoC) remain rare. Because these diseases are either emerging or are uncommon, the number of providers and practices specializing in EGIDs are limited, access to expert care is a barrier for many patients with EGIDs.3, 4
In this setting and with the experiences during the COVID-19 pandemic, telehealth has emerged as a powerful tool in transforming healthcare delivery.5 It transcends geographical barriers, expands access to specialists, and may allow for more convenient and timely consultations. Telehealth may also facilitate remote monitoring of chronic conditions, early intervention for health concerns, and improve patient-provider communication. However, a significant gap exists in our understanding of patient experiences with this technology in EGIDs and data on how EGID patients interact with telehealth, their preferences, and the effectiveness of virtual care are limited. This is important to study as characteristics of EGIDs make it a potential model for extending telehealth’s reach in highly specialized fields.
Management of EGIDs requires expertise in gastroenterology and allergy, patients may have to travel long distances for consultations, and longitudinal symptom monitoring is required,1 all of which are factors supporting use of remote interactions for timely disease management. In our clinical experience, we have observed that telehealth has had a high level of acceptability, decreased costs, and improved accessibility for patients with EGIDs. In this paper, we share our lessons learned about telehealth for EGIDs, including data on its acceptability and feasibility in EoE and non-EoE EGID patients.
EGID Partners as a platform for learning about telehealth
EGID Partners (egidpartners.org) is an online patient-centered research network designed and implemented by patient advocacy groups and EGID researchers.6, 7 Subjects were recruited via informational emails and through social media, directed messages to EGID patients through patient portals, webinars, and by physicians. Adults (≥18 years) with EoE or non-EoE EGIDs, and these same groups but for caregivers of children <18 years of age could join. At the time of joining EGID Partners, subjects provided consent to participate and completed a baseline survey collecting demographic and disease information, as previously described. We have previously shown that self-reported EGID disease status is valid for online reporting.8 The platform and this study were approved by the University of North Carolina Institutional Review Board.
For our investigation into telehealth utilization and experiences, we asked EGID Partners subjects to complete a one-time cross-sectional survey focusing on experiences with telehealth visits, including the type of telehealth visit, how the visit was performed, wait times, and their experience using telehealth for EGID care. Telehealth visits were defined as a visit between a healthcare provider and patient using both audio and visual telecommunications in a given encounter. Because non-EoE EGIDs can be associated with systemic complications and a higher symptom burden in patients than EoE, and also have no approved therapies, we compared EoE and non-EoE EGID patients with regards to their telehealth experience. Non-EoE EGIDs could include EoG, EoN, EoC, or any overlap of GI tract areas. We had 78 responders to the survey, of whom 35 (45%) had an EGID-related telehealth visit. Of those with EGID-related telehealth visits, 25 had a diagnosis of EoE alone, and 10 had a non-EoE EGID diagnosis, and 8 had overlapping locations of EGID involvement.
Patient experiences with telehealth
For both EoE and non-EoE EGID patient groups, most telehealth visits were provided for follow-up care (88 and100%, respectively) and most were with a gastroenterologist (84 and 100%) (Table 1). Participants reported that they completed their visits primarily on a laptop or a smartphone. A high proportion of participants reported proficiency using telehealth technology as well as having reliable internet service. The majority of patients had adequate support to schedule their visit, but only 24% overall were able to receive care from an out-of-state provider. The average wait time for an appointment was 4–6 weeks, and there was an average wait time of 8–9 minutes after logging on to connect with their provider.
Table 1.
Telehealth logistics and visit aspects in those with EoE and non-EoE EGIDS
| EoE (n = 25) | Non-EoE EGID (n = 10) | p | |
|---|---|---|---|
| Age (mean years ± SD) | 36.5 ± 18.8 | 29.3 ± 18.9 | 0.17 |
| Adult respondents (n, %) | 19 (76) | 5 (50) | 0.13 |
| Female (n, %) | 15 (60) | 5 (50) | 0.77 |
| White (n, %) (n=22, 8) | 21 (95) | 8 (100) | 0.54 |
| Type of visit (n, %) | |||
| New patient | 11 (44) | 4 (40) | 0.83 |
| Follow-up visit | 22 (88) | 10 (100) | 0.25 |
| EGID second opinion visit | 4 (16) | 3 (30) | 0.35 |
| Type of provider (n, %) | |||
| Primary care provider | 6 (24) | 4 (40) | 0.34 |
| Gastroenterologist | 21 (84) | 10 (100) | 0.18 |
| Allergist | 3 (12) | 6 (60) | 0.003 |
| Advanced practice provider | 4 (17) | 2 (20) | 0.82 |
| Dietician | 4 (16) | 3 (30) | 0.35 |
| Psychologist | 2 (8) | 4 (40) | 0.02 |
| Device used (n, %) | |||
| Phone | 16 (64) | 8 (80) | 0.36 |
| Tablet | 7 (28) | 5 (50) | 0.22 |
| Laptop computer | 16 (64) | 8 (80) | 0.36 |
| Desktop computer | 4 (16) | 2 (20) | 0.78 |
| Proficient with using telehealth technology (n, %) | 0.75 | ||
| Strongly agree | 17 (71) | 8 (80) | |
| Agree | 5 (21) | 1 (10) | |
| Disagree | 2 (8) | 1 (10) | |
| Strongly disagree | 0 (0) | 0 (0) | |
| Easy access to reliable and stable internet connection (n, %) | 0.22 | ||
| Strongly agree | 19 (79) | 6 (60) | |
| Agree | 5 (21) | 3 (30) | |
| Disagree | 0 (0) | 1 (10) | |
| Strongly disagree | 0 (0) | 0 (0) | |
| Received timely and adequate support to schedule the visit (n, %) | 0.80 | ||
| Strongly agree | 13 (54) | 5 (50) | |
| Agree | 10 (42) | 4 (40) | |
| Disagree | 1 (4) | 1 (10) | |
| Strongly disagree | 0 (0) | 0 (0) | |
| Able to easily schedule a telehealth appointment with an expert in another state (n, %) | 0.30 | ||
| Strongly agree | 5 (21) | 3 (30) | |
| Agree | 7 (29) | 5 (50) | |
| Disagree | 6 (25) | 0 (0) | |
| Strongly disagree | 6 (25) | 2 (20) | |
| Time to wait for the visit after scheduling (mean weeks ± SD) | 5.8 ± 9.4 | 3.6 ± 1.9 | 0.49 |
| Time to wait for appointment start on day of visit (mean minutes ± SD) | 9.3 ± 8.1 | 7.6 ± 3.9 | 0.55 |
| Able to spend adequate time with healthcare provider (n, %) | 0.55 | ||
| Strongly agree | 18 (72) | 6 (60) | |
| Agree | 6 (24) | 4 (40) | |
| Disagree | 1 (4) | 0 (0) | |
| Strongly disagree | 0 (0) | 0 (0) | |
| Able to fully discuss my health concerns with healthcare provider (n, %) | 0.78 | ||
| Strongly agree | 18 (72) | 7 (70) | |
| Agree | 6 (24) | 2 (20) | |
| Disagree | 1 (4) | 1 (10) | |
| Strongly disagree | 0 (0) | 0 (0) | |
| Able to communicate as effectively as an in-person visit (n, %) | 0.40 | ||
| Strongly agree | 16 (64) | 5 (50) | |
| Agree | 6 (24) | 5 (50) | |
| Disagree | 1 (4) | 0 (0) | |
| Strongly disagree | 2 (8) | 0 (0) | |
| Telehealth visit was similar to previous in-person visits (n, %) | 0.76 | ||
| Strongly agree | 12 (48) | 5 (50) | |
| Agree | 8 (32) | 4 (40) | |
| Disagree | 5 (20) | 1 (10) | |
| Strongly disagree | 0 (0) | 0 (0) | |
| Good understanding of the plan of care at the end of the visit (n, %) | 0.05 | ||
| Strongly agree | 16 (67) | 3 (30) | |
| Agree | 7 (29) | 5 (50) | |
| Disagree | 0 (0) | 2 (20) | |
| Strongly disagree | 1 (4) | 0 (0) | |
| Lack of direct physical contact during a telehealth visit was not a concern for me (n, %) | 0.27 | ||
| Strongly agree | 13 (54) | 8 (80) | |
| Agree | 7 (29) | 2 (20) | |
| Disagree | 4 (17) | 0 (0) | |
| Strongly disagree | 0 (0) | 0 (0) | |
| Concerned about the privacy of my health information during the telehealth visit (n, %) | 0.30 | ||
| Strongly agree | 2 (8) | 0 (0) | |
| Agree | 2 (8) | 0 (0) | |
| Disagree | 7 (29) | 6 (60) | |
| Strongly disagree | 13 (54) | 4 (40) | |
| Telehealth visit was covered by insurance (n, %) | 0.23 | ||
| Strongly agree | 15 (63) | 6 (60) | |
| Agree | 5 (21) | 3 (30) | |
| Disagree | 0 (0) | 1 (10) | |
| Strongly disagree | 4 (17) | 0 (0) | |
| Payment of telehealth visit was lower than for an in-person visit (n, %) | 0.04 | ||
| Strongly agree | 4 (17) | 0 (0) | |
| Agree | 1 (4) | 1 (10) | |
| Disagree | 10 (43) | 9 (90) | |
| Strongly disagree | 8 (35) | 0 (0) | |
| Other costs (travel, childcare, gas, etc) were lower than compared to an in-person visit (n, %) | 0.21 | ||
| Strongly agree | 12 (50) | 6 (60) | |
| Agree | 6 (25) | 4 (40) | |
| Disagree | 6 (25) | 0 (0) | |
| Strongly disagree | 0 (0) | 0 (0) | |
| Telehealth visit allowed less missed work or school compared to an in-person visit (n, %) | 0.50 | ||
| Strongly agree | 14 (58) | 6 (60) | |
| Agree | 4 (17) | 3 (30) | |
| Disagree | 6 (25) | 1 (10) | |
| Strongly disagree | 0 (0) | 0 (0) | |
| Highly satisfied with telehealth visit for EoE/EGID (n, %) | 0.13 | ||
| Strongly agree | 17 (71) | 4 (40) | |
| Agree | 4 (17) | 5 (50) | |
| Disagree | 3 (13) | 1 (10) | |
| Strongly disagree | 0 (0) | 0 (0) | |
| Experience during telehealth visits were equivalent to in-person visits (n, %) | 0.44 | ||
| Strongly agree | 11 (46) | 4 (44) | |
| Agree | 8 (33) | 5 (56) | |
| Disagree | 3 (13) | 0 (0) | |
| Strongly disagree | 2 (8) | 0 (0) | |
| Prefer telehealth visits over in-person visits for future follow-up appointment (n, %) | 0.34 | ||
| Strongly agree | 10 (42) | 3 (30) | |
| Agree | 5 (21) | 5 (50) | |
| Disagree | 7 (29) | 2 (20) | |
| Strongly disagree | 2 (8) | 0 (0) | |
| If offered, would use telehealth services again (n, %) | 0.68 | ||
| Strongly agree | 14 (58) | 6 (60) | |
| Agree | 7 (29) | 4 (40) | |
| Disagree | 2 (8) | 0 (0) | |
| Strongly disagree | 1 (4) | 0 (0) |
Nearly all respondents felt they were able to spend adequate time with their healthcare provider, discuss their health concerns and communicate as effectively as an in-person visit, while having lower travel-related costs and less missed work or school (Table 1). Concerns for lack of direct physical contact and confidentiality were rarely cited. More than 80% of participants had their telehealth visit covered by health insurance, though most reported that this did not decrease out-of-pocket costs for the visit. Overall, 87% of EoE patients and 90% of non-EoE EGID patients agreed or strongly agreed that they were highly satisfied with their telehealth visit, with most indicating preference for telehealth visits for future follow-up appointments, and 91% of all subjects agreed or strongly agreed that they would use telehealth services again if offered. Overall, responses to the survey did not differ significantly between EoE and non-EoE EGID patients.
Lessons learned and implications for telehealth for patients with EGIDs
Telehealth has emerged as a valuable tool in improving healthcare access and delivery for patients with chronic conditions, but feasibility and acceptability have yet to be explored in detail in EGIDs. Through our survey of EGID Partners, an online patient-powered research network, we observed that patients with EGIDs report telemedicine to be a favorable and convenient mode of healthcare delivery, particularly for follow-up visits, due to its convenience and accessibility. Notably, it was perceived as being comparable to in-person visits. In addition, telehealth visits were typically covered by insurance for most patients, while not having to miss work or school or travel to the care provider’s facility, making it a cost-effective option. However, this accessibility was not uniform, highlighting the need for continued advocacy to ensure consistent insurance coverage and overcome regulatory barriers such as interstate physician licensure restrictions that limit access to subspecialist care. While our survey relied on a limited sample size and patient-reported data, it provides a unique and important perspective on EGID patients’ experience with telehealth, paving the way for future research and improvements in health care delivery.
To our knowledge, there has only been one prior study on telehealth in EGIDs.9 In this retrospective study based on medical record review, Kewalramani and colleagues observed telemedicine to be effective for continued care, with low no-show rates and substantial travel, time, and costs savings, for EoE patients during the COVID-19 pandemic. Though they did not include non-EoE EGID patients, their results were generally consistent with ours. Our study also aligns with telehealth literature in other chronic GI disorders such as inflammatory bowel disease (IBD).10 IBD patients have benefited from telehealth interventions, with research showing positive outcomes in medication adherence, disease monitoring, and patient satisfaction.10 In comparison to IBD, there are many questions that still relate to EGID-specific telehealth including whether the unique aspects of EGIDs require tailored virtual approaches. Particularly for EoE, where long-term management relies on discussion of symptoms response and endoscopy and histology data to adjust or maintain therapies with minimal physical examination required, it may be an ideal model for extending telehealth’s reach in highly specialized fields. The fact that nearly all respondents agreed or strongly agreed that they were highly satisfied with their telehealth visit and would use these services again suggests a potentially sustainable model of healthcare delivery. Given the rarity and potential systemic complications of non-EoE EGIDs, additional work would be needed to further confirm utility in the follow-up setting.
There are a number of practical considerations and lessons from our data when implementing telehealth for EGIDs, given that it remains in a nascent stage.5 Increased access to specialists for geographically isolated populations is currently balanced by providers limited to conducting telehealth within states where they are licensed. We lack comprehensive data on patient experience, hindering our ability to tailor and optimize virtual care models for this specific population, and our survey did not collect data on whether difficulty with out-of-state visits was due to insurance or provider factors, or both. Understanding patient preferences, comfort with and access to technology, disparities in access, and potential barriers to effective virtual consultations is crucial. It is similarly important to assess provider preferences as well. Some providers may feel that a telehealth visit does not suit their needs, precludes performing a physical exam or establishing a direct connection with a patient or family, may not be logistically possible, or may interrupt the workflow of the day. Telehealth visits also preclude the ability to use emerging point-of-care and less invasive monitoring tests for EoE. A practice needs to establish whether telehealth should be limited to follow-up visits only, if it can be used in pediatrics as well as adults, how to best check in an EGID patient for a telehealth visit to update medications and past history, approach to billing, and directing follow-up plans. Finally, research is needed to fully assess the efficacy of telehealth, whether evaluating disease progression is possible remotely, whether adherence to prescribed pharmacologic and dietary therapies can be improved, and whether long term adverse outcomes can be prevented or decreased.
Our survey data also has limitations to note, including a small sample size with only a subset of the respondents having participated in telehealth and an inability to have comparisons to non-EGID controls. Data are also self-reported, and while we have shown self-report of diagnosis is valid,4 we do not have corroborative data from the medical record to confirm the elements of telehealth reported by patients or to know granular details about the visit itself. Strengths are inclusion of both EoE and non-EoE EGID patients and use of the online EGID Partners platform that allows patients and patient advocacy groups to participate in collaborative research.
In conclusion, by examining an online patient-powered research platform, patients with EGIDs report that telehealth can be an effective, acceptable and feasible method of delivering care, with approximately 90% reporting satisfaction with their visit and being willing to use telehealth again. Importantly, telehealth generally allowed patients to miss less work and school while having similar clinical experiences to in-person visits. Although there are a number of issues and potential barriers remaining related to telehealth, this study supports that telehealth is a tool that should continue to be utilized, studied, and optimized for all EGID patients.
Funding:
This study used resources from the University of North Carolia Center for Gastrointestinal Biology and Disease (NIH P30 DK034987). We also acknowledge Takeda, Allakos, and Ellodi as EGID Partners sponsors (they did not have any role in design or conduct of this study, or approval of publication).
Footnotes
Disclosures: Dr. Dellon reports research funding from Adare/Ellodi, Allakos, Arena/Pfizer, AstraZeneca, Celldex, Eupraxia, Ferring, GSK, Meritage, Miraca, Nutricia, Celgene/Receptos/BMS, Regeneron, Revolo, Sanofi, Shire/Takeda; consulting fees from Abbvie, Adare/Ellodi, Akesobio, Alfasigma, ALK, Allakos, Amgen, Apollo, Aqilion, Arena/Pfizer, Aslan, AstraZeneca, Avir, Biocryst, Bryn, Calypso, Celgene/Receptos/BMS, Celldex, EsoCap, Eupraxia, Dr. Falk Pharma, Ferring, GI Reviewers, GSK, Holoclara, Invea, Knightpoint, LucidDx, Morphic, Nexstone Immunology/Uniquity, Nutricia, Parexel/Calyx, Phathom, Regeneron, Revolo, Robarts/Alimentiv, Sanofi, Shire/Takeda, Target RWE, Upstream Bio, and educational grants from Allakos, Aqilion, Holoclara, Invea. Dr. Hiremath serves as an advisor to Eupraxia, Regeneron, Sanofi, and Takeda. Dr. Venkatesh serves as a consultant to Regeneron and Sanofi. Dr. Jensen receives research funding from TARGET RWE and Regeneron, an education grant from Sanofi, and consulting fees from Regeneron and Takeda.
This study complies with the STROBE guidelines/checklist.
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