Most caregivers of children with food allergies go online at least weekly for information
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Key takeaways:
- Nearly two out of three participants used online searches to find information on food allergies at least weekly.
- One out of four participants used social media at least weekly for food allergy information.
More patients are using online platforms to obtain information on food allergies, trusting professional organizations and allergists the most, according to a study published in Annals of Allergy and Asthma and Immunology.
“Online searches and social media are used by billions of people around the world, and the information found can affect medical decision making,” Aikaterini (Katherine) Anagnostou, MD (Hons), MSc, PhD, professor of pediatrics, allergy and immunology division at the Baylor College of Medicine as well as first author of the study, told Healio.
“People may be swayed by inaccurate information found on websites or by reading anecdotal reports from others with similar health conditions. The aim of our study was to better understand how parents of food-allergic children use online resources to seek information for their child’s food allergy,” Anagnostou, who also is a member of the Healio Allergy/Asthma Peer Perspective Board, continued.
Methods
The study included caregivers of children with a food allergy who were enrolled between May 2020 and May 2021 from two pediatric academic centers in Texas and Ohio. Authors designed a 12-question survey to assess use of online resources.
The surveys were de-identified and summarized by frequencies with proportions, median with 25th/75th percentile, or mean with standard deviation. Statistical comparisons were done using the Wilcoxon rank sum test and Fisher’s exact test.
Results
Among a total of 145 completed surveys, 93% (n = 135) reported using online search engines in general, weekly, daily, or multiple times a day, with Facebook being the most utilized social media platform.
Caregivers reported that the most common reasons for using social media included looking at tips for school/travel, signs and symptoms of allergic reactions, and seeking food allergy support groups. Searching for ways to treat allergic reactions as well as ways to prevent and test for food allergies were also common.
Part of the survey included asking participants their “reasons for searching online or through social media for food allergy-related information.” Participants responded with the following: convenience (113/139; 80%), ease of information (109/141; 77%), and quick answers (105/140; 75%). Participants also responded that they sought online information because of the large information available (82/140; 59%), and because they believed the information was reliable (40/139; 29%).
Participants indicated that they most often trusted information that came from professional organizations, allergist social media accounts and advocacy groups. They saw other parents and celebrities as being less trustworthy.
Also among the participants, 43% said they did not discuss the information they found online with their allergist and 16% of participants expressed that using social media gave them anxiety.
Oral immunotherapy was received by 27 (19%) of the participants’ children. Authors reported that there was a significant difference between participants that received OIT and those that did not in the frequency of using online search engines and social media for food allergy support groups.
Caregivers of children receiving vs. not receiving OIT more often discussed information from online sources with their allergist (37% vs. 16%; P = .03). The OIT caregivers also followed food allergy information from celebrities more often than those without OIT (11% vs. 0%; P = .006).
“The most common reasons for searching online for food allergy related information were convenience, ease of information and quick answers,” Anagnostou said. “The majority of our survey participants reported that they didn’t follow recommendations found on social media with regards to food allergies and that they most frequently trusted information from professional sources rather than celebrities or other parents. This finding was reassuring. However, the finding that parents rarely discuss information found online with their allergist was concerning.”
Authors further highlighted that almost two out of three caregivers used online searches at least once a week to seek food allergy information, but only one out of four used social media.
Because online sources are often mistaken as evidence, the authors said these findings were positive, as less than one-third of survey participants considered information found online as reliable. Anagnostou emphasized that with the emergence of new therapies for the management of food allergies such as OIT and omalizumab (Xolair; Genentech/Novartis), patients need to be careful with what they find online.
“Unfortunately, information related to these therapies that is found online is frequently inaccurate or misleading,” she said. “A conversation with a qualified allergist is recommended in order to obtain accurate and evidence-based information.”
The support of a clinician in navigating allergy information is very important, according to Anagnostou. Clinicians should incorporate evidence-based education and engage in proactive discussions about online resources in their practice.
“Allergists can help families navigate the often confusing web of information found online, by asking families about what they are reading online, being open to discussing the information and by providing evidence-based resources in the electronic health record and after-visit summary,” she said.
With so many caregivers and patients turning to the internet for information regarding their health, authors stressed that more research is needed to better understand the ways in which caregivers evaluate online information and how this affects patients.
“This area represents a valuable opportunity for allergists, patient organizations, support groups and other key stakeholders to create strategies that will mitigate inaccurate and false messaging that may emerge online,” Anagnostou said. “More research is needed to better understand how patients and families evaluate existing online information and the role that online platforms may play in medical decision-making.”
Perspective
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Given the pervasive use of online search engines and social media, it is not surprising that a high percentage of parents rely on these platforms for information and support. The findings are significant as they highlight the need for accurate and trustworthy information, especially when it comes to health-related topics.
In my experience as senior public health communications manager for Allergy & Asthma Network, these findings resonate with what I have observed. Many parents seek quick and convenient access to health information online. However, the challenge remains in ensuring that the information they find is accurate and reliable.
The reliance on professional organizations, advocacy organizations and health care professionals’ social media accounts is a positive trend, but there is still a considerable portion of parents who do not discuss this information with their health care providers, which can lead to misinformed decisions.
My advice to health care professionals is to encourage and engage in open discussions with caregivers and patients during consultations about the health information they find online. This can help bridge the gap between online resources and professional medical advice. I would also suggest offering a list of trusted websites, social media accounts, and professional organizations that provide evidence-based information. Including these in after-visit summaries can be very helpful. Lastly, I would advise doctors to educate caregivers on how to evaluate the reliability of online sources. This can include tips on identifying reputable websites, checking the credentials of authors and recognizing red flags for misinformation.
Many professional organizations provide reliable and accurate comprehensives resources for those seeking information related to food allergies. Some of those organizations include Allergy & Asthma Network; American Academy of Allergy, Asthma & Immunology; American College of Allergy, Asthma & Immunology; CDC; FARE; Food Allergy and Anaphylaxis Connection Team; Kids with Food Allergies; and the NIH.
Some allergists with social media accounts whom we follow include Zachary Rubin, MD (@rubin_allergy on X/Twitter and Instagram); David Stukus, MD (@AllergyKidsDoc on X/Twitter and Instagram); Payel Gupta, MD (@NycDoctorGupta on X/Twitter and @nycdoctor on Instagram); Nana Mikeku, MD (@allergistdoc on Instagram); Leena Padhye, MD (@allergist.md on Instagram); and Purvi Parikh, MD (@panipurvinyc on Instagram). There are also some great social media influencers who create fun, engaging, and accurate food allergy content, although it is important to ensure that those influencers are credible when seeking advice.
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