title: Coeliac disease and the gluten-free diet: a review of the burdens; factors associated with adherence and impact on health-related quality of life, with specific focus on adolescence.
abstract: Adherence and non-adherence to a gluten-free diet (GFD) may impact negatively on health-related quality of life (HRQoL). Understanding the factors that influence compliance could help inform management and also guide support. With a particular focus on adolescence, this narrative review critiques current literature on the burdens associated with following a GFD and the factors associated with adherence. Studies highlight a variety of burdens faced by individuals with coeliac disease, including the cost, access and availability of gluten-free (GF) foods, as well as the dilemmas experienced when eating out, travelling and socialising with friends. A number of studies report that adolescents face stigmatisation and feel isolated in social situations and at school. Additional burdens that are highlighted are a lack of knowledge regarding CD and GFD difficulties in interpreting food labels, as well as dissatisfaction with the organoleptic properties of GF foods. Factors associated with poor adherence in adolescence include older age, an absence of immediate symptoms, difficulties eating out and poor palatability of GF foods. Conversely, better emotional support and stronger organisation skills have been associated with superior adherence. Significant associations have been reported between HRQoL measures and adherence, although the findings are inconsistent. Limitations in research methodologies exist and data are restricted to just a few countries. Further research specific to adolescence is required to identify independent predictors of adherence.
authors.affiliation: Department of Health Sciences, Queen Margaret University, East Lothian, UK. loiswhite.nutrition@gmail.com.
authors.forename: L E
authors.initials: LE
authors.lastname: White
authors.affiliation: Department of Health Sciences, Queen Margaret University, East Lothian, UK.
authors.forename: E
authors.initials: E
authors.lastname: Bannerman
authors.affiliation: Department of Paediatric Gastroenterology and Nutrition, Royal Hospital for Sick Children, Edinburgh, UK.
authors.forename: P M
authors.initials: PM
authors.lastname: Gillett
mesh_terms: D000203:Activities of Daily Living / Q000523:psychology; D000293:Adolescent; D017195:Adolescent Nutritional Physiological Phenomena; D000328:Adult; D001007:Anxiety / Q000209:etiology / Q000517:prevention & control; D002446:Celiac Disease / Q000178:diet therapy* / Q000503:physiopathology / Q000523:psychology; D002648:Child; D002664:Child Nutritional Physiological Phenomena; D017281:Cost of Illness; D055050:Diet, Gluten-Free / Q000009:adverse effects; D019317:Evidence-Based Medicine; D005518:Food Preferences; D019648:Foods, Specialized / Q000009:adverse effects; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D010349:Patient Compliance; D057285:Precision Medicine; D011788:Quality of Life; D012944:Social Support
keywords: adolescence; attitudes; behaviour; coeliac disease; quality of life