Hashing out current social media use in eosinophilic esophagitis

Summary

Background

Patients affected by chronic illnesses have increasingly turned to social media to gather disease-related information and connect with other patients. Eosinophilic esophagitis (EoE) is a chronic disease with rapidly evolving management options. The aims of this study are to describe the current use of social media in EoE patients and caregivers, evaluate whether use of social media to learn about EoE is associated with higher medical knowledge of this disease, and evaluate social media factors that could result in improved patient and caregiver disease understanding.

Methods

We surveyed individuals 18 years or older in July 2020 who identified as either having EoE, or as being a caregiver for someone with EoE, through an invitation link sent to email subscribers of the American Partnership for Eosinophilic Disorders.

Results

Of the 212 survey responders, 82.5% used social media to learn about EoE. Caregivers were more likely to use social media than patients (OR 2.30, 95% CI 1.11–4.76). Social media use was not associated with higher knowledge of EoE. Distrust of posted content was the largest barrier to use and 87.7% of responders believed that physician contribution to posts would enhance the quality of information.

Conclusions

In one of the first known studies to evaluate use of social media in the context of EoE, we found that a majority of patient and caregiver respondents use social media to learn about EoE. This highlights the potential opportunity to leverage social media to provide current and accurate EoE educational content for patients and caregivers.

INTRODUCTION

Eosinophilic esophagitis (EoE) is a chronic inflammatory condition of the esophagus that affects individuals of all ages. Symptoms of EoE typically include dysphagia, chest pain, and heartburn. If untreated, chronic inflammation can lead to fibrosis and esophageal strictures, placing patients at risk of food impactions that often require emergent endoscopic intervention.¹ There are currently a variety of management options for EoE, including proton pump inhibitors (PPIs), topical steroids, and elimination or elemental diets.² Given the rapidly increasing incidence and prevalence of EoE over the last two decades, discoveries into novel therapeutic options are evolving quickly.³ These factors make it challenging for patients and caregivers to stay up to date with the current therapeutic options.

While patients and caregivers obtain significant medical information from their healthcare providers, it has been shown that patients with chronic diseases such as asthma, diabetes, and inflammatory bowel disease often turn to social media to gather disease-related information and connect with similar patients and caregivers.^4–7 Social media encompasses any online platform that allows users to form networks to share information and ideas. Classic examples include Facebook, Instagram, and Twitter. As of 2019, it is estimated that over 70% of American adults use at least one form of social media.⁸ The use of social media among EoE patients and caregivers is unknown.

The primary aim of this study was to describe the current use of social media in EoE patients and caregivers. We evaluate whether use of social media to learn about EoE is associated with higher medical knowledge of this disease. We also aim to determine changes that can be made to social media to improve patient and caregiver disease understanding and management.

METHODS

Overview

This study is an anonymous cross-sectional survey of individuals who are members of the American Partnership for Eosinophilic Diseases (APFED) group, a national nonprofit patient advocacy group for eosinophil-associated diseases.⁹ Individuals were eligible for participation if they were 18 years of age or older and self-identified as either having eosinophilic esophagitis or as being a caregiver for someone with EoE. The survey was available online for completion between 3 July 2020 and 31 July 2020 via email (Supplement 1).

The study protocol was reviewed by the University of Pennsylvania Institutional Review Board and granted exemption on 29 June 2020.

Survey

The survey was built using Qualtrics survey software, was 23 questions in length, and took approximately 4 minutes to complete. The responder’s demographic information including year of birth, gender, race, and education was collected.

Participants were asked to identify any social media platforms they use (Facebook, Twitter, Instagram, LinkedIn, YouTube, Other) for the purpose of learning about EoE, with the ability to check none, one, or multiple platforms. Next, those who used social media to learn about EoE were asked to rate how useful it was for their learning. Those who reported not using social media to learn about EoE were asked to select their primary reason for this.

All participants were then asked a series of multiple-choice questions to ascertain their preferences on how social media could be enhanced. This included selecting content areas of interest and identifying whether they would like to have physician representation on social media. Finally, all participants were asked to complete a 5-question multiple choice quiz (Table 1) that assessed their knowledge about various aspects of EoE: pathophysiology, symptoms, diagnosis, and management.

Table 1.

EoE knowledge quiz

Question	Choices
1) How do you diagnose eosinophilic esophagitis?	a)Ultrasound of the abdomen b)Endoscopy with biopsies c)Bloodwork d)Based on clinical symptoms (no testing required)
2) Eosinophilic esophagitis can cause:	a)Cancer of the esophagus b)Strictures of the esophagus c)Achalasia d)A hiatal hernia
3) Which of the following is a treatment for eosinophilic esophagitis?	a)Proton pump inhibitor b)Topical steroids c)Elimination diet d)All of the above
4) Which of the following statements is true about eosinophilic esophagitis?	a)It is caused by acid reflux b)It only affects adults c)It is a chronic allergic disorder of the esophagus d)It only affects patients who have a family history of eosinophilic esophagitis
5) Which of the following is not typically associated with eosinophilic esophagitis?	a)Gastroparesis b)Food impaction c)Difficulty swallowing d)Heartburn

Data analysis

Our primary aim was to describe the current use of social media in EoE patients and caregivers to learn about EoE. Specifically, we identified the current social media platforms used, described the perception of information that is currently available, and analyzed characteristic of individuals who use social media to learn about EoE.

To identify factors associated with use of social media, we assessed the following variables: age, sex, race, education level, and status (dichotomized as either patient or caregiver). Age was estimated using the middle of the year of birth and a reference date of 1 July 2020. Certain categorical variables were collapsed to avoid small sample sizes for the analyses. Race was collapsed to White and non-White (which included Black, Asian, and Other). The highest completed education variable was collapsed from five categories to three categories (by grouping together ‘vocational,’ ‘high school,’ and ‘none of the above’ into one category and maintaining ‘college’ and ‘graduate school’ as separate groups). For the outcome variable of ‘use of social media to learn about EoE,’ we labeled each survey responder as a ‘user’ if the participant identified using one or more social media platforms to learn about EoE and ‘nonuser’ if the participant identified using no social media platforms to learn about EoE.

To identify factors associated with being a ‘user,’ variables of interest were evaluated using univariate logistic regression and incorporated into a multivariable logistic regression model if they met a significance level of P < 0.25. Statistical analyses were limited to complete cases given minimal missing data as shown in Table 2.

Table 2.

Baseline characteristics of survey responders

	n	% or mean (SD†)
Total population	212
Age		47.5 (11.4)
Status
Patient	96	45.3%
Caregiver	116	54.7%
Race
White	194	91.5%
Black	2	0.9%
Asian	5	2.4%
Other	10	4.7%
Missing	1	0.5%
Gender
Male	43	20.3%
Female	167	78.8%
Other	2	0.9%
Highest Completed Education
Vocational school	8	3.8%
High school	18	8.5%
College	96	45.3%
Graduate school	88	41.5%
None of the above	1	0.5%
Missing	1	0.5%

^†SD: standard deviation

We then sought to evaluate whether being a ‘user’ was associated with higher medical knowledge of disease. We assessed EoE knowledge based on the score (0–100%) on a 5-question multiple-choice quiz, with each question worth an equal number of points (Table 1). We created a linear regression model where the outcome was score and the independent variable of interest was ‘user.’ Other covariates that were considered for inclusion in the model were age, sex, race, education level, status (dichotomized as either patient or caregiver), and number of social media platforms used (categorized into 0 platforms, 1 platform, or 2 or more platforms). These covariates were evaluated using univariate linear regression models and incorporated into the multivariable linear regression model if they met a significance level of P < 0.25.

Lastly, we aimed to identify changes that could be made on social media that could result in improved patient and caregiver disease understanding and management. To ascertain this, we asked responders to select content areas they would like to see on social media and identify whether they felt medical professional presence on social media would be useful. This descriptive outcome was analyzed using proportions.

All statistical analyses were performed using Stata version 15 (College Station, TX, USA), and statistical significance was assessed at the 0.05 level.

RESULTS

The survey link was sent to a total of 2,173 APFED subscribers who indicated they had EoE or cared for someone with EoE. We received a total of 215 survey responses (9.9% response rate). Three of the responses were discarded due to invalid responses (nonsensical year of birth), for a total of 212 analyzed responses.

The median age of responders was 47.5 (SD 11.4). The majority of responders identified as caregivers for patients with EoE (54.8%), while 45.2% identified as being patients with EoE. Of note, the average age of patients and caregivers did not statistically significantly differ. Responders were predominantly female (78.8%) and predominantly white (91.5%). Responders had completed varying levels of education (3.8% vocational school, 8.5% high school, 45.3% college, 41.5% graduate school, 0.5% none of these). These findings are summarized in Table 2.

Our primary objective was to describe current use of social media and identify factors that were associated with use of social media to learn about EoE. Of the 212 valid responses, 82.5% (95% CI 76.7–87.4%) of people reported using social media to learn about EoE (‘user’). The most commonly used platform was Facebook, followed by Other, YouTube, Instagram, Twitter, and lastly LinkedIn (Fig. 1). Univariate analyses revealed that age, sex, race, and education level were not statistically significantly associated with being a ‘user.’ Status (patient vs. caregiver) was associated with the outcome, with caregivers having higher odds of using social media to learn about EoE compared to patients (OR 2.30, 95% CI 1.11–4.76).

Fig. 1.

Social media platforms used to learn about eosinophilic esophagitis.

We next sought to identify whether being a ‘user’ was associated with increased knowledge of EoE based on quiz score. The average overall score for all responders who took the quiz was 90.85% (95% CI 88.94–92.76). A univariate analysis showed that being a ‘user’ was not significantly associated with higher knowledge of disease, with ‘users’ scoring 0.05 points higher than ‘non-users’ (95% CI -4.99-5.08). Univariate analysis of other covariates of interest showed that highest completed education level was significantly associated with a higher score, while age, sex, race, number of social media platforms used, and status were not associated with a higher score. The final multivariable linear regression model included ‘user’ and education.

In the adjusted model, the reference group of individuals who were ‘nonusers’ and reported completing vocational school, high school, or ‘none of the above,’ scored 84.4% (95% CI 77.22–91.05) on average. Responders who completed college had an average increase in score of 6.63 points (95% CI 0.61–12.64) and those who completed graduate school had an increase in score of 8.08 points (95% CI 2.01–14.14) compared to the reference education group. ‘Users’ scored 0.35 points higher than ‘nonusers’ (95% CI -4.65–5.35).

Of these 175 patients who reported using social media to learn about EoE, 49.1% (n = 86) rated it as extremely or very useful, 40.0% (n = 70) rated it as slightly or moderately useful, 10.3% (n = 18) found it not useful, and 0.6% (n = 1) did not respond. Among users who used only one platform, 57.38% of Facebook users, 37.5% of Twitter users, 54.55% of Instagram users, 60% of LinkedIn users, and 40.62% of YouTube users found social media to be extremely or very useful.

Next, we asked responders to identify content areas they were interested in seeing on social media. Responses showed that 87.3% (n = 185) wanted information on latest research in EoE, 81.1% (n = 172) were interested in learning scientific facts about EoE, 67.9% (n = 144) had interest in learning about ongoing clinical trials, 61.3% (n = 130) wanted information about medications, and 59.9% (n = 127) desired information about diet (Fig. 2).

Fig. 2.

% of responders interested in learning about various content areas.

The 17.45% (95% CI 12.6-23.2%) of people (n = 37) who did not use social media to learn about EoE were asked to report the primary reason for not using social media to learn about EoE (Fig. 3). Based on responses, 32.4% did not trust the content that was posted, 16.2% thought the information would be unhelpful, 8.1% thought it was time consuming, 8.1% reported they did not know how to use social media, and 27.0% reported ‘other’.

Fig. 3.

Barriers to using social media to learn about EoE.

We next evaluated whether responders would be interested in connecting with their physicians online. While 76.9% (n = 163) of people had interest in following their care providers on social media, only 1.4% (n = 3) had actually already connected with their provider on social media.

When asked what purposes social media should be used for, 76.4% (n = 162) of responders thought it should be used to obtain EoE related information, 70.8% (n = 150) thought it should be used for connecting with EoE related organizations, and 60.8% (n = 129) thought it should be used to connect with others with EoE. Of note, a significantly larger proportion of caregivers compared to patients thought that social media should be used for connecting with other patients with EoE (70.7 versus 48.9%).

DISCUSSION

General social media use as well as health-care specific social media use have increased significantly over the last decade.¹⁰ Social media provides a potential resource for information about diseases processes. It additionally links both patients and caregivers who are affected by the same disease, providing a virtual support network. This cross-sectional study is the first ever to evaluate the use of social media in patients and caregivers affected by EoE. Studying social media use in the context of eosinophilic esophagitis is interesting given the wide range of age groups that are affected by EoE, the increasing prevalence of disease, and the variety of evolving treatment modalities that can be used to manage the disease.

A striking majority of patients (82.5%) surveyed use social media to learn about EoE and 89% of those individuals found it at least somewhat useful. The most commonly used social media platforms include Facebook followed by YouTube, Instagram, and Twitter. Interestingly, our results reveal that caregivers have a higher likelihood of using social media to learn about EoE compared to patients with EoE. The reason for this is unclear, but it is possible that caregivers are more likely to rely on social media for information than patients, since they may not be present for all clinic visits where they can receive information from care providers. Another possibility is that the caregivers are parents of children who are unable to explicitly express their symptoms, and so parents are turning to others who can share their experiences on social media.¹¹ This is supported by our finding that a larger percentage of caregivers compared to patients use social media for the purpose of connecting with others affected by or caring for those with EoE.

Our study revealed that only increasing education level was associated with higher scores on the EoE knowledge quiz, with those who completed graduate school scoring an average of 8.06 points higher than those who completed high school or vocational school. Use of social media to learn about EoE was not associated with higher scores on the EoE knowledge quiz. However, given that it is not possible to ascertain what an individual’s score would have been prior to accessing information on social media, we cannot conclude that social media did not enhance an individual’s score. Contrastingly, it is also possible that information on social media about EoE is inaccurate, as previously reported with inflammatory bowel disease, and thus it may not enhance an individual’s factual knowledge about EoE.^12,13 Further studies should be performed to evaluate the accuracy of information about EoE that is currently available on social media.

An intuitive way to ensure higher accuracy of social media medical postings would be to increase physician presence whether directly or via partnership with medical and nonprofit healthcare organizations. In this study, 71.2% of responders said that they would be interested in obtaining information from physicians on social media, 76.9% reported they would like to follow their own provider on social media, and 87.7% agreed that the quality of EoE information posted on social media could be improved if physicians contributed to posts. Based on these responses, there is a clear desire for increased physician representation on social media. However, we recognize that this must be done with caution to avoid inappropriate replacement of social media for in-person clinic visits and to prevent any breaches in patient confidentiality.

A key limitation of this cross-sectional study is the potential for selection bias introduced by the study population and response rate of about 10%. Individuals who received the email survey and made a choice to respond to it could conceivably have a greater preference for obtaining electronic information about EoE compared to nonresponders and the general population. Nevertheless, obtaining preferences from these individuals could allow us to tailor future educational interventions on social media to those who are potentially more likely to access it. It is worth noting that the overall average quiz scores across all responders were high. Given that the quiz tested very basic understanding of EoE, it may not have been effective in identifying knowledge gaps in the EoE population.

A strength of this study is that it captured responders across the United States allowing for broad geographic diversity. Our study design allowed for representation from those who seek care at all type of medical centers ranging from tertiary care centers to community-based practices. Another unique feature of this study is that it includes responses from both patients and caregivers. Given that EoE can affect individuals starting from birth, management can largely be handled by parents who may lean on social media networks for support. With this in mind, we found it important to include caregivers in our study. The responses from this survey been successfully used to direct design of educational information about EoE that has been disseminated on Facebook.

Further research should focus on understanding the impact of educational interventions through social media on EoE knowledge, evaluating the accuracy of available information, gathering longitudinal data on the impact of social media use on EoE knowledge, evaluating the utility of increased physician presence on social media, and assessing the effectiveness of social media in connecting individuals to others affected by EoE and with EoE related organizations.

This study sheds light on the current use of social media to learn about EoE, identifies barriers to use, and explores ways to enhance information on social media so that it can best meet the needs of those affected by EoE. As patients and caregivers do their best to keep up with the latest updates on EoE, we recognize that it is challenging to stay abreast with the rapid changes that are occurring in this evolving field. We believe that social media, a form of communication utilized by the majority of Americans, has significant potential in providing patients and caregivers the latest and most accurate information about this disease in an accessible and engaging manner.

Funding

SUT received grant support from National Institutes of Health (NIH)/National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) T32-DK007740.

Disclosures

KLL is a consultant for Medtronic. MS is a consultant for Gilead, Inc. CAB received research support from Lucid Diagnostics, Inc.

Author Contributions

Designing the study: SUT, MJS, MS, KLL.

Acquisition of data: SUT, MJS, AW, KLL.

Analysis and interpretation of data: SUT, CAB, ABM, MS, YXY, KLL.

Writing the report or critically revising: SUT, CAB, ABM, MJS, AW, MS, YXY, KLL.

Abbreviations

EoE

eosinophilic esophagitis

APFED

American Partnership for Eosinophilic Disorders

PPI

proton pump inhibitor