Panzer, Rebecca M.*; Dennis, Melinda†; Kelly, Ciaran P.†; Weir, Dascha‡; Leichtner, Alan§; Leffler, Daniel A.†
*Center for Child and Adolescent Health Research and Policy, Massachusetts General Hospital for Children
†Beth Israel Deaconess Medical Center, Celiac Center
‡Children's Hospital Boston, Center for Celiac Disease
§Division of Gastroenterology and Nutrition, Children's Hospital Boston, Boston, MA.
Address correspondence and reprint requests to Rebecca M. Panzer, MA, RD, Celiac Disease Center, Beth Israel Deaconess Medical Center, East Campus, Dana 601, 330 Brookline Ave, Boston, MA 02215 (e-mail: email@example.com).
Received 14 December, 2011
Accepted 18 June, 2012
D.A.L. is funded by NIH Grant DK1042103881.
The authors report no conflicts of interest.
Celiac disease (CD) is an autoimmune disorder that affects 1% of the population; occurring in girls 2 to 3 times as often as in boys (1,2). It is initiated by the ingestion of gluten, which causes an intestinal inflammatory reaction that can result in short- and long-term complications such as gastrointestinal discomfort, nutritional deficiencies, osteoporosis, other autoimmune diseases, and malignancy (1–3). Treatment for CD is complete avoidance of all of the products containing gluten (4).
Maintaining a gluten-free diet (GFD) is complicated because of environmental and social constraints (5). Successful GFD compliance is associated with young diagnostic age (6–9), performance of a diagnostic procedure (10,11), presence of symptoms (12), disease-related knowledge in the proximal family (7,13), palatability of GF foods, and the cost of obtaining GF products (9,14). Adherence decreases during adolescence as young adults gain independence (16–18) and question the need for the GFD restriction (19–21).
Considerable adherence research has been conducted in teenage and adult populations affected by CD; however, the transitional phase of “young adult” (ages 18–24 years) has received limited attention. In other related chronic diseases such as food allergies (22) and diabetes (23,24), adherence to medical regimes often drops precipitously during this stage of life. The purpose of the present study is to explore the barriers to GF compliance in young adults with CD on the college campus.
This observational research consisted of 3 components: one-on-one telephone interviews, a focus group, and an anonymous online survey. All materials were reviewed for face validity by a team of gastroenterologists, dietitians, and social workers with CD expertise at the Celiac Center at Beth Israel Deaconess Medical Center and Children's Hospital, both in Boston, Massachusetts.
Young adults (fluent in English) with biopsy-proven CD, ages 18 to 24 years were recruited through electronic media including list serves, Web sites, and social networking sites to participate in the survey, focus groups, and/or interviews. Regional and national celiac support groups, health profession list serves, and college administrations provided platforms for dissemination.
To assess dining services, a sample of programs, of various sizes, at public and private colleges in the United States were identified. Structured telephone interviews were conducted with head chefs, dietitians, and/or dining service managers.
Student and administrative interview responses to the present study were coded. Descriptive statistics provided quantification of responses. Institutional review board approval was obtained from Emerson College. Consents were obtained in the interview and focus group components of the study. Participation in the survey was based upon implied consent.
Responses from 78 young adults were collected (21 interviews, 19 girls/2 boys; 50 survey responses, 46 girls/4 boys; 1 focus group, 7 girls; Table 1). Of those interviewed, 5 (45%) reported that CD played a factor in deciding which college to attend and the remaining 6 (55%) reported that it did not play a role (Table 2).
Participants reported the greatest motivation for adherence was immediate symptoms following exposure, followed closely by concern about the long-term consequences of exposure (Table 3). Eight of the 21 interviewed (38%) reported that they never intentionally stray from the GFD (Table 3). When asked to rank their barriers to compliance, the most common themes ranked from most challenging to least were accommodations by dining services, social situations, access to GF options, and financing the diet (Table 3).
Students reported that the greatest challenges to eating on campus (from most challenging to least) were cross-contamination, limited variety, meal plan exemption policies, limited understanding by staff, and inconsistent labeling (Table 4). All of the students interviewed reported that their dining services claimed to accommodate the GFD; however, 60% of students interviewed reported frequent illness (defined by >1 episode per week) from dining hall cross-contamination and 30% of these experienced symptoms that interfered with their class attendance.
Six of the 21 (29%) interviewed said their dining hall labeled foods at time of service, but only 2 of the 21 interviewed (9.5%) said GF labeling was clear and accurate. Labeling at service was limited to macronutrients, major ingredients, and/or the 8 major allergens. In conversation, students reported inconsistency in food preparation, which resulted in unintentional gluten exposure such as vegetables steamed in recycled pasta water. Fifty-two percent of interview and focus group respondents voiced concerns about their health owing to limited GF foods in the dining halls; however, 10 (48%) of those interviewed and 29 (58%) of those who completed the survey reported that requesting exceptions to foods offered was the greatest social challenge of the diet.
The accommodation most frequently offered to students with CD was the option to call or email dining services to set an appointment to eat; however, 71% of the students reported in interviews social barriers such as unpredictable peer meal times and long waits. Two of the 21 (9.5%) interviewed reported a separate GF facility for students. All of the students reported the meal plan was mandatory while living on campus, regardless of illness. All of the students purchased additional groceries to supplement the meal plan.
Response From Dining Services
The characteristics and responses of the 6 dining programs are displayed in Table 5. One of the 6 dining services interviewed reported that they prefer not to label their products owing to inability to guarantee GF food. All administrators said students have access to detailed ingredients either through the Internet or through in-person meetings. All facilities reported at least annual mandatory allergen training for staff. However, those interviewed were unanimous in the responsibility being on the student, not on dining services to differentiate GF from non-GF foods.
All of the respondents said GF options were available in relation to the number of reported (not assumed) students with CD on campus. All of the programs offered the option to cook additional “special” items for students in the back of the house whether purchased from the standard vendor or supplied by the student. Four of the 6 respondents offered separate GF cooking/storage facilities in the front of the house for students to access. One facility detailed that owing to severe food allergies, access to the separate GF area requires a special key ensuring that only students with allergies can access it. Those facilities without separate GF facilities expressed an inability to cater to CD because of low demand (demonstrated in Table 5 as <0.20% of students reported CD).
Five of the 6 colleges interviewed required meal plans for all of the students living on campus. Of those that required the meal plan, only 1 said that they would allow an exemption for severe food allergies. When probed, administration clarified that requiring meal plans for all of the students ensures an even distribution of expenses and allows them to keep costs low for all of the students. All of the administrators said their facilities would accommodate requests for students with special dietary needs.
The second theme expressed by respondents was the social challenge of the diet; namely, explaining their needs to others (Table 3). One-fourth of interview and focus group respondents reported misinterpretation from others regarding the necessity for the diet. All but 1 respondent reported that these encounters did not cause them to eat gluten, but instead discouraged socializing. Sixty-one percent noted that those unfamiliar with the diet often downplayed the importance of adherence.
All of the interview and focus group respondents reported that roommate challenges were minimal. All of the respondents labeled their foods. Seventy-one percent of interview respondents said they cleaned before and after cooking to avoid cross-contamination. Every person said he or she used his or her own set of pots/pans and/or relied on disposable plates and dishware.
Logistics and Demographics
Accessing and financing GF foods were additional challenges cited by young adults with CD in the interviews (Table 3). Many reported parental assistance in obtaining groceries (29%) and additional monetary funds (52%).
Additionally, we evaluated whether participant demographics were associated with reported gluten exposure. Overall, 45.3% of participants reported awareness of gluten exposure in the college environment. We found that participants who admitted to gluten consumption were younger than participants without gluten exposure (20.2 vs 21.4 years, P = 0.016) and ate a higher number of meals outside the home (7.0 vs 4.7 per week, P = 0.02). There was no association between gluten consumption and age of diagnosis (P = 0.042), family history of CD (P = 0.62), peer pressure to eat gluten-containing foods (P = 0.52) or drinks (P = 0.18), issues with affordability of GF foods (P = 0.88), years lived away from home (P = 0.41), or present distance living from home (P = 0.42).
The results of the present study elucidate the challenges experienced by young adult college students in adhering to the GFD on campus. Problems lie primarily in the accommodations institutions provide and not in young adults’ self-efficacy. These data suggest that although they perceive themselves as independent in terms of their disease management, they operate in a dependent dietary environment (by necessity of the meal plan) that does not match their expectations to eat off the line, similar to their peers. The economic viability of maintaining safe GF options is in question by dining services and reported by students to be unsuccessful. This demonstrates the need for improved communication and mutually inclusive education of the barriers experienced by both parties.
Given the prevalence of CD in the United States of 1 in every 133 individuals (1) and the estimated diagnostic prevalence of approximately 1 in 1000, the reported number of individuals with CD to dining services is low. This suggests that students are not requesting assistance from dining services. Similarly, none of the schools interviewed matched this incidence (Table 5). Administrations reported in conversations that increased demand would improve their scope of services related to the GFD.
Although all of the institutions reported mandatory training, students more often report that the staff do not execute proper practices. Administration cites that responsibility lies with the student to advocate for their needs; however, students express the requesting exceptions and explaining the diet as prime social deterrents. The discrepancy between students’ comfort levels and the expectations of administration suggests that individuals would benefit from education and counseling regarding navigation of a campus meal plan.
The GFD also presents a variety of social challenges; however, respondents expressed confidence in their ability to manage the social aspects of the GFD. The social challenges of negotiating with peers where and when to eat was described as short lived until students located an accommodating social circle. The same was true for roommates. After vocalizing and acting on their needs, accommodation became routine.
Young adults with CD entering college or university face unique challenges in maintaining the GF lifestyle. Living away from home for the first time, combined with social pressures, and miscommunication with university dining services contribute to intermittent gluten exposure. Although further research is needed to address the socioeconomic factors and explore the challenges of young adults with CD who do not attend college, it is clear that educational resources and support tailored specifically to young adults with CD and the college campuses serving them are needed to optimize the health of this population.
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celiac disease; diet; gluten free; transition to adulthood; young adult
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