Impact of Gluten-free Camp on Quality of Life of Children and Adolescents with Celiac Disease

Abstract

OBJECTIVE-A gluten-free camp allows children with celiac disease (CD) to enjoy a camp experience without concern and preoccupation with foods they eat or the stigma of their underlying disease. The objective of this study was to evaluate the impact of gluten-free camp on quality-of-life indicators for children and adolescents with CD.METHODS-Children aged 7 to 17 years with CD were administered a 14-question survey at the beginning and the end of a 7-day gluten-free camp. Surveys used a Likert scale to examine general well-being, emotional outlook, and self-perception for the week before each survey. Differences between the time points were compared. Data were analyzed by paired t test.RESULTS-Of the 104 campers who attended camp, 77 (21 male) completed the survey at both time points. Most (70%) had been on a glutenfree diet (GFD) for <4 years. All seemed to benefit from camp, no longer feeling different from other kids or feeling frustrated with a restricted diet. A more beneficial impact was found for campers who were on a GFD for <4 years. Overall, campers reported an improvement in 11 of 14 questions, statistically significant (P <.05) for 8 of those 11 questions. Improvement was observed in each of the 3 categories of questions: wellbeing, self-perception, and emotional outlook.CONCLUSIONS-Children who had CD and attended a week-long glutenfree camp demonstrated improvement in well-being, self-perception, and emotional outlook. The positive effects of camp were more apparent among campers who had been on a GFD for <4 years compared with those who had been on a GFD for ≥4 years, suggesting an adaptation to CD with time. A gluten-free camp that provides an environment of unrestricted foods can at least temporarily alleviate stress and anxiety around food and social interactions. Durability of these observations on return to daily life requires additional study. Keywordspediatric; sprue; quality of life Celiac disease (CD), or gluten-sensitive enteropathy, is a digestive disease characterized by intolerance to gluten, a protein composite found in wheat, rye, and barley. Even minimal exposure to gluten results in small intestinal injury that can lead to a variety of symptoms, including abdominal pain, weight loss, diarrhea, and irritability, and long-term complications such as osteoporosis, infertility, and malignancy. Although a strict GFD is challenging, studies have shown that the adherence is high, as high as 98% among adults in the United States and 95% among children in Canada. 3,15 Children are typically aware when they have ingested gluten: 54% of children in the study reported a symptomatic reaction within 0.5 to 60.0 hours after ingestion of a gluten-containing product. 3 Almost all children recognized the importance to their health of eating a GFD. 3 We surveyed a group of children who had CD and attended a gluten-free camp to assess whether the camp experience leads to improvement in measured quality of life. We specifically assessed general well-being, emotional outlook, and self-perception...

Concept Mapping Analysis of Social Skills Camp Experience for Children with Disabilities

“…Two of the seven clusters relate directly to positive interpersonal fulfilment (Nurturing Relationships, and Non-judgmental Environment and Attitude). These themes are consistent with literature with the positive social interaction and communication (e.g., Bongiovanni et al, 2010, Cushner-Weinsteine et al, 2007Kiveal, 2013;McAvoy et al, 2006), acceptance (e.g., Meltzer & Rourke, 2005), general satisfaction, fulfilment and wellbeing for campers with disabilities (Moons et al, 2006;Nettina et al, 2003, Wu et al, 2011. In addition to the social aspects, campers also report a sense of personal growth and empowerment, as in the "Independence and Recognition" and "Personal Growth" clusters.…”

“…In their systematic review, Moola et al (2013) identified 21 studies of specialised therapeutic camps for children with chronic illnesses. The authors reported that in general, TR experiences tended to have some positive effects on the children with disabilities, including reduced aggression (Barr et al, 2010), improved wellbeing, self-perception, and emotional outlook (Bongiovanni, Clark, Garnett, Wojcicki, & Heyman, 2010), improved social and communication skills (Cushner-Weinsteine et al, 2007), increased self-esteem (Devine & Dawson, 2010;Torok, Kokonyei, Karolyi, Ittzes, & Tomcsanyi, 2006), improved self-management skills (Hunter, Rosnov, Koontz, & Roberts, 2006), higher peer acceptance (Meltzer & Rourke, 2005), better general physical and mental health functioning (Moons et al, 2006), better coping skills (Nicholas, Williams, & MacLusky, 2009), higher self-competence (Pulgaron, Salamon, Patterson, & Barakat, 2010), better quality of life (Shepanski et al, 2005), and general life satisfaction (Wu, Prout, Roberts, Parikshak, & Amylon, 2011). A range of other studies on specialised camps have also identified positive impacts for children with disabilities, including greater self-competence (Dawson & Liddicoat, 2009;Hill & Sibthorp, 2006), independence (Dawson & Liddicoat, 2009), social competence and sense of belonging (Dawson & Liddicoat, 2009;Lopata et al, 2010), positive parent-child communication skills (Walker, Barry, & Bader, 2010), care giving appreciation (Dawson & Liddicoat, 2009), ADHD symptom reduction (Hantson et al, 2012), diminished autism symptoms (Lopata et al 2010), reduction in anxiety (Briery & Rabian, 1999), and general physical and emotional empowerment, well-being, and satisfaction (Nettina, Donnelly, & Florio, 2003).…”

Health‐Related Quality of Life in Spanish Children With Coeliac Disease

“…This phenomenon observed in most CD studies (6,9,22,26,35,36) could be because of the higher prevalence of the disease in females (3,7,8,18,(37)(38)(39)(40)(41)(42)(43), and also to their greater concern about the disease (7). We effectively observed that more mothers than fathers completed the questionnaire, as also reported by other authors (6,9,17).…”

Determination of Gluten Peptides Associated with Celiac Disease by Mass Spectrometry

“…Its origin is related with the presence of genes human leukocyte antigen (HLA)-DQ2 or HLA-DQ8, and both genotypes cause the predisposition for the disease [26], but 95% of CD patients exhibit the DQ2 serotype class [25]. In predisposed individuals, it can manifest in any stage of life, since that the contact with the protein fraction of wheat, barley, or rye was established [27].…”