Authors: Irene H. Yuan (*Division of Allergy, Pulmonary, and Critical Care Medicine, Vanderbilt University Medical Center, Nashville, Tennessee), Matthew Greenhawt (†Section of Allergy/Immunology, Department of Pediatrics, Children’s Hospital Colorado, School of Medicine, Aurora, Colorado), Elissa M. Abrams (‡Section of Allergy and Clinical Immunology, Department of Pediatrics, University of Manitoba, Winnipeg, Canada; §Division of Allergy and Immunology, Department of Pediatrics, University of British Columbia, Vancouver, Canada), Edwin H. Kim (ǁDivision of Pediatric Allergy and Immunology, University of North Carolina School of Medicine, Chapel Hill, North Carolina), S. Shahzad Mustafa (¶Division of Allergy, Immunology, and Rheumatology, Rochester Regional Health, Rochester, New York; #Division of Allergy, Immunology, and Rheumatology, University of Rochester School of Medicine and Dentistry, Rochester, New York), Edward G.A. Iglesia (*Division of Allergy, Pulmonary, and Critical Care Medicine, Vanderbilt University Medical Center, Nashville, Tennessee)
Categories: Article
Source: Annals of allergy, asthma & immunology : official publication of the American College of Allergy, Asthma, & Immunology
Authors: Irene H. Yuan, Matthew Greenhawt, Elissa M. Abrams, Edwin H. Kim, S. Shahzad Mustafa, Edward G.A. Iglesia
There are limited data on food allergies among college students. In this article, we review the most current available studies. These self-reported surveys and qualitative interviews reported overall poor avoidance of known allergens and low rates of carrying self-injectable epinephrine among students with food allergy. College students may exhibit risk-taking food behaviors due to a number of factors, including age-appropriate risk-taking predilection, strong social influences, and lack of experience in self-advocacy. Having to disclose an otherwise invisible condition repeatedly in a new environment may also lead to “disclosure fatigue,” creating an additional barrier to self-advocacy. Common themes in the narrative include hypervigilance, stigma management, and concern about others’ misunderstanding of food allergy. Although there is a paucity of data in this area, it is likely that having greater support at the institution level, along with support from peers and faculty, may help improve awareness, self-injectable epinephrine carriage, and allergen avoidance. This review also discusses strategies for preparedness at school, including specific steps to maximize safety.
“I was not just dealing with the typical transition to college such as moving away from home, starting a new school, meeting new people, but I was also trying to eat, which most people do not think about, because they just go out to eat and do not really think about it. But for me, every meal is a big ordeal.”—college student.^1^
IgE-mediated food allergies affect up to 8% of children and adolescents, though the exact prevalence in college students is unknown.^2^ Limited food fatality studies report that the greatest number of fatalities seems to occur in adolescence and young adulthood.^3,4^ However, adolescents were likely overrepresented in these studies, and there is a lack of data on overall similarly aged subjects who survive such events. Regardless of fatality, adolescents may be at higher risk for more severe food-allergic events based on several behavioral determinants, including a tendency toward increased risk-taking behaviors, decreased parental supervision, and age-appropriate exploration and expansion of diet.^5^
Life after secondary education presents unique challenges, including a transition to living independently for the first time, with the task of daily responsibility for their food allergies now shifting to the college student. Seamless health care transition (HCT) places emphasis on the young adult taking responsibility for their medical care, while receiving continued support from clinicians, caregivers, and campus staff (Fig 1).^6^ Notably, adverse effects associated with poor HCT include decreased medical compliance, patient dissatisfaction, higher emergency department utilization, poor health outcomes, and higher cost of care.^6^ In this article, we review the most recent findings on food allergies in college, with a summary of key studies in Table 1.^1,7–10^ We highlight the potential risks for allergic reactions and discuss strategies for preparedness at college, including specific steps to maximize safety.
Limited data on food allergy among college students reveal overall poor avoidance of known allergens, low rates of carrying self-injectable epinephrine (SIE), and inconsistent institutional-level policies.^7–10^ Consistent food allergy policies were nonexistent at most institutions before 2008.^8–10^ Though not specific to college students, adolescents in general report high rates of reactions, with more than half reporting 2 to 5 reactions in their lifetime and approximately two-thirds reporting at least 1 reaction in the preceding 5 years according to 1 survey.^7^ In another self-report survey in this age group, approximately half of the respondents reported a history of anaphylaxis, and 38% reported using an epinephrine autoinjector to treat a reaction.^10^ The most common self-reported allergens in this age group include peanut and tree nuts, milk, shellfish, wheat, egg, and fish.^9,10^ Foods associated with reported fatalities included peanut, tree nuts, and milk.^3,4^
Food allergy may be burdensome with a negative impact on quality of life. In a cross-sectional study of 200 young adults and adolescents with a food allergy, respondents reported barriers to socialization, including limitations on spending time with friends (going out to eat, going shopping, and going to the movies), participating in extracurricular activities, attending school and sporting events, and getting part-time jobs.^10^ At least 1 study revealed lower quality of life and higher rates of anxiety in adolescents with food allergies.^11^ Older teenagers ranked their concern about food allergy higher than concerns regarding dating and peer pressure.^7^
College-aged persons are thought to be at increased risk for severe food reactions, with possible reasons including inaccurate health beliefs (eg, poor perception of risk and vulnerability), increased risk-taking behavior (experimentation, potential disregard for rules, sense of rebellion, and poor perception of consequence), increased social pressures, and having newfound autonomy,^5,12^ though few data objectively substantiate this claim. One recent study described the contribution of “disclosure fatigue” on risk perception, or the tiring of the persistent need to communicate an otherwise invisible condition to others, which may be especially salient during the transition to a new college environment.^1^
Despite most adolescents (90%) expressing the belief that their food allergy is life threatening,^10^ rates of SIE carriage among these individuals were reported to be low and inconsistent. Among those surveyed, only 60% consider themselves “very” prepared,^7^ with less than half of college students reporting consistent carriage of any kind of emergency medication (epinephrine, antihistamines, or albuterol).^9^ Limited survey data note a wide range in percentage of adolescents who reported “always” carrying their SIE, ranging anywhere from 7% to 87%,^7,10^ though the true rate is likely less than 50%.^8,9^ Rates of carrying SIE may vary based on context, with the highest rates reported in activities such as dining at restaurants and traveling and much lower reported rates for social events (eg, with friends, at dance clubs, or on a date), when wearing tight clothing, and in situations of presumed lower exposure risk (participating in sports).^7^ Frequently reported reasons for not carrying an SIE include forgetting to do so, belief that there is a low chance for a reaction, inconvenience or discomfort, lack of prescription, and feeling self-conscious.^8–10^ Notably, lack of carrying SIE and a delay in using SIE are commonalities noted among reported food allergy fatalities, though there are no data comparing carriage or availability rates among similar-aged adolescents who have severe reactions and survive.^3,4^
College-aged adolescents are prone to high-risk behaviors despite the technical ability to appreciate and understand risk.^13^ This discrepancy is attributable to heightened reward sensitivity, which has been found in neuroimaging studies,^13–15^ along with well-characterized adolescent traits of “egocentricism” and a “personal fable of invincibility.”^13,16^ With some adolescents, increased risk-taking behaviors may also be associated with poor health literacy. In an index survey study of 287 college students with food allergy on a single campus, only 40% of respondents reported always avoiding known allergens. A significant portion reported willingly continuing to eat the reported allergenic food, with justifying reasons including inconsistency of previous symptoms, belief that the item did not contain enough allergen to trigger a reaction, belief in their ability to treat any reaction, and belief that they could eat around the allergen.^8^ These students were also significantly more likely to report inconsistent carriage of an SIE. Similarly, in an earlier study of 174 adolescents aged 13 to 21 years, half (54%) reported eating foods containing a known allergen, and 42% ate foods that “may contain” the allergen, with reasons including previous tolerance of similar foods and self-testing to see whether their allergy still persisted.^7^ Adolescents’ understanding of “anaphylaxis” and when to use SIE may also be inconsistent, with only half of participants in this same study able to identify severe reactions as “anaphylaxis.”^7^
For many students, college represents the first time for assuming full responsibility of their own medical conditions. This shift in responsibility may be significant, as limited survey data reported that most adolescents (68%) relied on parents and guardians to remind them to carry their SIEs.^10^ Those with self-described “overprotective mothers” were more likely to fall in a lower behavioral risk group, noted in the study to be the group significantly more likely to carry their SIE, ask about allergenic ingredients when eating out, and avoid other high-risk behaviors.^10^
Disclosure of allergy status in a new environment is an issue of concern. Across several studies, college students reported that others had limited awareness of their food allergy, including close campus peers and food preparers.^8,9^ There was also reported limited awareness of their peers’ knowledge in where SIEs are kept and how to use these devices.^7,8^ However, in the 1 longitudinal study of such on-campus trends, Karam et al^9^ revealed that on a single campus, disclosure of food allergy to close campus contact modestly improved over time, as did the belief that a close contact could use SIE in an emergency. In this study, Karam et al^9^ also surveyed nonallergic students, who have good levels of awareness regarding students with food allergy and how to use an SIE.
College-aged students may lack experience and confidence in navigating social interactions necessary to minimize risk.^1^ Unlike their parents who have had years of experience in requesting accommodations, choosing optimal routines and environments, and building up social networks that act as support and leverage, students are just starting to learn how to independently manage their conditions and advocate for themselves. The parents also have an advantage based on age and power, as others may be more likely to take the concerns of a 40-year-old professional more seriously over those of an 18-year-old teenager.^1^ College students must learn to navigate interactional demands, including how and when best to disclose information to their new peers, teachers, and other staff in a way that elicits support and accommodation. Some of these difficulties could potentially be solved with earlier initiation of HCT, in an age-appropriate manner with progression to higher levels of milestones with proven responsibility. There has been no work in this area in food allergy however.
A 2022 study conducted by Schelly et al^1^ used in-depth qualitative interviews to identify common social themes in the daily lives of college students with food allergies. This study found that the interviewees consider food allergy to be poorly understood by the general population, with their conditions sometimes perceived as food intolerance, picky eating, or even a mode of deceit. Participants in the study reported stories of family members and friends disbelieving, ignoring, or making jokes about their allergies. One participant with a peanut allergy recounted an experience in her sorority in which she was called “difficult” when she did not eat ice cream with the group and was given “so much crap about it, and [they] were like, egging me on to eat the ice cream.” In other studies, 43% to 62% of teenagers reported being teased or have been bullied because of their food allergy.^7,10^ Notably, however, it is difficult assessing the pervasiveness of bullying across the general food allergy population or how it compares to bullying of other chronic conditions (or just general age-related bullying regardless of medical conditions), given the risk of highly biased sampling.
Certain risk-avoidance behaviors may be stigmatizing, as those departing from routine social conventions could be misconstrued as exaggerated hypervigilance. Although clearly communicating one’s health needs is an appropriate protective measure, such disclosure may invite unwanted questions and negative attention. Having these repeated conversations throughout the day can be arduous and lead to “disclosure fatigue,” resulting in the decision to remain silent or avoid certain social situations.^1^ In the study of Schelly et al,^1^ participants reported avoiding “food-centric events” such as parties. Besides risk of accidental ingestion, failure to disclose food allergies may have negative psychological impacts, including anxiety and feelings of isolation, “like you are alone, fighting a battle all the time.” Social influences are especially important in this age group, especially during post-secondary education in which leaving home may result in social upheaval. With the rapid change in social networks, “friendsickness” motivates college students to highly prioritize making new friends.^17^ Students in the study of Schelly et al^1^ reported being concerned about “standing out” or being a “hindrance” to friends. They endorsed a “sense of guilt that you are making [other people] go out of their way.” One participant said he would “just grab stuff [from the cafeteria] and go and not ask what was in it, and I had 3 major reactions because I would just eat stuff, which was scary, but I just did not care because I did not want to be a burden to my friends.” Even bringing one’s own food to events caused stress from “sticking out among the crowd of people who are not [bringing] their own food.”^1^
Of note, despite the perception from those interviewed in the study of Schelly et al^1^ that those without food allergy lack understanding of the issue, this may represent a somewhat limited vantage. In the study of Karam et al,^9^ more than a thousand students without food allergy were sampled to assess general awareness and knowledge. The nonallergic students expressed good familiarity with food allergy being a chronic health problem, and 81.8% of responding students reported knowing someone with a food allergy. Moreover, 44.6% reported knowing how to use an epinephrine device, 59.7% were able to verify allergen labeling in the dining hall, and 70.2% indicated the necessity of strict avoidance. These data were collected in 2014, specifically in a follow-up to a reported perceived lack of awareness 6 years earlier.
There is little information currently on college students undergoing allergen immunotherapy. As oral immunotherapy (OIT) and other emerging therapies become more frequently used in the treatment of food allergy, an increasing number of adolescents may be going to college on maintenance therapy. There are practical considerations for food allergen immunotherapy for the adolescent and young adult. First, Food and Drug Administration−approved peanut (Arachis hypogaea) OIT allergen powder-dnfp is only approved in individuals 17 years old or younger. Thus, older individuals who wish to begin buildup will require off-label peanut allergen powder-dnfp use or with protocols using currently available food products. Given that a large percentage of adverse effects may occur during the buildup phase,^18^ it may be preferable for patients to achieve maintenance before matriculation, while still in the familiar, stable, and controlled home environment. The prescribing allergist should reinforce education regarding OIT responsibilities before the student’s departure, such as observing safe-dosing rules, disclosing adverse events, and adhering to the protocol.^19^ Emphasis should be placed on the student taking responsibility for their dosing and having a treatment plan in place for potential allergic reactions. Special planning may be needed if refrigeration of their products is required, along with maintaining a supply of the product. Most importantly, students should establish local allergy care to direct the therapy and plan to meet with student health to ensure services are readily available if needed. Given class and extracurricular schedules that are highly varied, OIT may ultimately prove to be too burdensome for some students to initiate or continue while in college. Possible future therapeutics (eg, other forms of immunotherapy) such as epicutaneous or sublingual immunotherapy or injectable biologics (such as anti-IgE therapy) may be more amenable to the schedule of a college student.
There is an emerging notion that chronic medical condition can contribute to emotional and social resilience in young adults.^20^ In a study, Warren et al^10^ reported that among their sample of 200 adolescents with food allergy, there was some positive impact of living with a food allergy. Among respondents, 89% reported that their food allergy made them more responsible, 72% attributed it to making them a better advocate for themselves and others, and 64% felt a greater appreciation and desire to help others with special needs. Many reported that their condition brought them closer to family and friends. In addition, many also found more appreciation for the foods they can eat and developed healthier eating habits. Further studies may seek to expand on how food allergy may contribute to empathy, resilience, and better communication skills, along with other positive attributes that may contribute to a richer college experience.
According to a study, adolescents and young adults aged 14 to 22 years with food allergies may be less likely to engage in risk-taking food behaviors if they have greater support from peers, parents, and teachers and individualized food allergy plans.^10^ Individual action items such as those listed in the college readiness checklist can also be helpful in encouraging individual responsibility and engaging peer and institutional support (Fig 2).
The stage before transitioning to independent living on a college campus is an opportune time to clarify any food allergy labels. Clinical reactivity to certain food allergens may wane over time, making it possible for some individuals to outgrow their allergy. Notably, most IgE-mediated egg, milk, wheat, and soy allergies resolve before adulthood, and though peanut, tree nut, shellfish, and finned fish allergies tend to persist, some may outgrow these allergies as well.^21^ In addition, some individuals may have had a presumptive diagnosis of “food allergy” based on sensitization alone, without confirmatory reproduction of symptoms.^22^ Either way, “delabeling” (or reverifying) food allergies may relieve a significant burden at a time in which a young adult will otherwise be taking on new cognitive and social challenges. It may be appropriate to offer oral food challenges to ascertain the allergy and the need for avoidance. Overdiagnosis and unnecessary food avoidance may worsen anxiety and lead to unnecessary precautions. For those with severely impairing food anxiety, seeking cognitive-behavioral therapy emphasizing consistent graded psychosocial exposure may help to alleviate fears and promote a healthier level of risk tolerance.^23^
The online Food Allergy Research and Education (FARE) Food Allergy College Search website is an available resource for adolescents and their families to research school-specific accommodations, dining options, and emergency services. Currently, there are 1200 voluntarily participating colleges, with 66% reporting allergy-friendly stations in the dining hall and 7% with undesignated epinephrine stocked for emergency response.^24^ This database consists of self-reported data or information gathered from college websites and may be subject to inaccuracies. Families are encouraged to contact colleges directly as part of their decision-making process. Interestingly, the study of Karam et al^9^ specifically sampled campuses that were not participating in this program at the time of the study, and in comparison to schools that did participate, there was no significant difference in food allergy awareness. FARE’s “Navigating College” educational resource page and the “CDC Healthy Schools” section on food allergies on the Centers for Disease Control and Prevention website may offer additional ways colleges can provide support.
College students with a food allergy should carry an emergency pack with them at all times containing an SIE and a personalized food allergy action plan. This recommendation is unchanged from food allergy management in elementary and high school. Unlike at lower levels of school, there is no central office to keep this plan or their epinephrine unit at college, so the student is in charge of maintenance and carriage. The action plan should contain a list of food allergies, signs and symptoms of an allergic reaction, treatment as advised by the student’s physician, and emergency contact information.
Students should be aware of student health services location and hours and inquire about their capacity for providing emergency care. It is not reported how many campus health services have allergists on staff or other clinicians with awareness of how to manage food allergy. Students should also be encouraged to meet with dining services after enrollment to notify them of their food allergy status. There are currently no studies comparing the safety of different on- or off-campus housing options (single room, having a roommate, or having own kitchenette). Per FARE, 22% of colleges self-reported roommate accommodations,^24^ and students who are interested may consider contacting their school to inquire about the possibility of being paired up with someone sharing a similar allergy. Students should also notify any close on-campus peers such as roommates of their diagnosis and management needs. Having a roommate could add a level of security in helping with allergen avoidance and managing any potential reactions.
In some contexts, food allergy may qualify the legal criteria for “disability,” defined as having an impairment that substantially limits 1 or more major life activities, including eating or breathing.^25,26^ However, this has not always consistently been viewed as such in all legal contexts and is an emerging advocacy issue. This point is frequently misunderstood by families and the advocacy community. Students with food allergies may be afforded protection under federal civil rights laws such as Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act, which aim to protect those with disabilities from discrimination.^25,26^ Most colleges and universities receive federal funding, and if the food allergy is considered a disability, there would then be potential consideration to accommodate students under Section 504. High school 504 plans do not carry over to higher education. It is the student’s responsibility to contact the office of disabilities to discuss feasibility of such plans and options. Again, the authors reiterate that disability status specifically as applied to food allergy is not guaranteed and remains a controversial topic that has inconsistent implementation.
For those students who rely on on-campus dining services, active communication with those preparing their food is key. In a study, only 24% of college students reported that their food preparer knew about their food allergy, though in longitudinal follow-up, this was noted to have improved over time.^8,9^ A close relationship with dining hall managers or chefs can be highly beneficial. Meeting with dining services after enrollment or on the first day of school can provide information on which stations provide allergen-free options, food preparation and cross-contamination risk, and resources such as online applications for checking ingredients. When dining out at restaurants, students are encouraged to call ahead to arrange for accommodations and to ask about allergenic ingredients once there.
In advice that is applicable to patients of all ages, students should see their allergist regularly to update their food action plans. Allergists should emphasize always carrying an SIE at all times and indications for its use, including symptoms of anaphylaxis and not just for the term “anaphylaxis” itself. As concurrent uncontrolled asthma can be a risk factor for fatal anaphylaxis,^27^ those with asthma should work with their doctors to optimize control.
The burdens of education and preparedness cannot fall wholly on the student. College-led initiatives can increase global staff and student awareness and create a safer environment. Early data indicated that many food reactions occurred in the dining halls,^8^ which might have been attributable to poorly reported labeling and allergen-free alternatives offered at the time (2007–2008), a trend that improved when the same campus was surveyed 6 years after.^9^ From another older survey, the data indicated that participants wanted wider meal options, allergen-safe areas in the cafeteria, designated staff members with whom to discuss meals, and increased education of fellow students.^7^ Other studies have revealed improved staff awareness, recognition, and confidence in management of food allergy reactions after training with online and/or in-person modules.^28,29^ Colleges can consider universal training of food-handling staff and allergen labeling in all dining halls to boost food safety.
Of the limited data currently available on food allergy trends at college, a large portion comes from early studies in the 2000s. Since the publication of these surveys, campaigns to promote use of anaphylaxis action plans have increased. Patient advocacy organizations (eg, FARE, Food Allergy Canada, Allergy and Anaphylaxis Australia, and Anaphylaxis Campaign [United Kingdom], among other global organizations) have led efforts to promote food allergy awareness on college campuses. The European Academy of Allergy and Clinical Immunology has also published guidelines on the transition of care in adolescents with allergies and asthma.^30^ More research is needed on whether such educational interventions have led to reduction of high-risk food behaviors in college students. In an era of increased public awareness of food allergy and especially given the role of peers in helping mitigate food risk and manage reactions, there remains also a need to continue to assess knowledge and perceptions among nonallergic students to better understand the presence of unresolvable barriers and misperceptions of illness.
On review of the most recent available literature on food allergy on college campuses, several issues remain salient. There is overall poor avoidance of known allergens and low rates of carrying SIE among students with food allergy. College-aged adolescents may be at risk for severe reaction due to several factors, including age-appropriate risk-taking predilection, strong social influences, and lack of experience in self-advocacy. Physicians play an important role in education and assistance in transitioning to full autonomy during this critical time. With the appropriate support and resources, we empower college students with food allergies to confidently manage their own condition, while also successfully engaging in all aspects of experiences that make college so rewarding.