Research reportIntentional and inadvertent non-adherence in adult coeliac disease. A cross-sectional survey☆
Introduction
Coeliac disease (CD) is a chronic inflammatory intestinal disorder characterised by a heightened immunological response to ingested gluten in genetically susceptible individuals. Originally a disease of childhood, CD is now more frequently first diagnosed in adults and has a prevalence of around 1% in Europe and the US (Bingley et al., 2004, Dube et al., 2005, Lohi et al., 2007, West et al., 2003). This change in presentation is partly explained by the increasing use of serological tests for active case-finding and for targeted screening in high risk groups (Collin, 2005, Hin et al., 1999, Jones, 2007, Korponay-Szabo et al., 2005). Advances in diagnostic testing, together with improved recognition of CD (National Institute for Health, 2009), have also resulted in an increased number of individuals diagnosed with atypical, minimal or no symptoms (Mulder & Cellier, 2005). The mainstay of treatment for CD is strict life-long adherence to a gluten-free diet (GFD). For most patients, this results in full clinical and histological remission (Holmes & Catassi, 2000) and is associated with improvements in symptoms and quality of life (Midhagen & Hallert, 2003), a decrease in long term health risks and health gains for problems associated with CD such as infertility, fatigue (Siniscalchi et al., 2005), and depression (Hallert and Sedvall, 1983, Hallert et al., 2002, Whitaker et al., 2009). The GFD is restrictive and can be difficult for some patients to follow, however, and the most common cause of persistent symptoms is gluten consumption (Dewar et al., 2012, Hopper et al., 2007). This is compounded by confusing food labelling and the expense and limited availability of GF foods despite their availability on prescription in the UK and other European countries and increasing availability of GF foods in supermarkets. Adherence to the GFD is reported to range between 36% and 96% and is associated with a variety of demographic, psychosocial and clinical factors (Ford et al., 2012, Hall et al., 2009, Sainsbury and Mullan, 2011). Adherence is not usually conceptualised in behavioural terms, despite the acknowledgement of both intentional and inadvertent gluten consumption within the literature (Black and Orfila, 2011, Casellas et al., 2009, Dewar et al., 2012, Vahedi et al., 2003). No study has specifically examined the factors associated with each type of non-adherence in coeliac disease. Although the primary concern in terms of clinical outcomes is actual gluten consumption, greater understanding of these very different behaviours is important in understanding dietary self-management and may inform potential interventions. This study investigates the factors associated with both intentional and inadvertent gluten consumption in adults with CD.
Section snippets
Methods
A total of 31 family group practices in North East England, covering both rural and urban areas, participated in the study. Using Read code searches of their computerised clinical records, they identified all adult coeliac disease patients, to whom they then posted a self-completion questionnaire (n = 566). A reminder was sent 10–14 days after the initial mailing. The response rate was 53.9% (n = 305). Ten participants reported not having been diagnosed with coeliac disease, seven responses were
Results
One hundred and fifteen (40.1%) respondents reported having intentionally consumed gluten consumption over the last 6 months, of whom 102 (88.7%) also reported inadvertent gluten consumption. Overall 155 (54.0%) had mistakenly consumed gluten at least once over the same period. 71 (24.7%) had not intentionally consumed gluten, and had made only one or two mistakes. Eighty two (28.6%) reported not having consumed gluten either intentionally or inadvertently. See Fig. 1.
Some respondents (n = 19, 7%)
Discussion
This is the first study to characterise intentional and inadvertent non-adherence to a gluten-free diet in patients with coeliac disease. Our findings add to those from other studies looking at the association between concepts from existing theories of health behaviour (Ford et al., 2012, Leffler et al., 2008, Sainsbury and Mullan, 2011), by demonstrating the importance of this distinction in understanding adherence to the GFD. Both types of non-adherence are common with only 28% of respondents
Conclusion
Distinguishing between intentional and unintentional gluten consumption is important in understanding dietary self-management in CD. Mistaken gluten consumption is more frequent than intentional consumption and these two types of non-adherence are explained by different factors. Constructs from social cognitive models of health behaviour usefully predict intentional gluten consumption but are less useful for inadvertent consumption. Our findings suggest that interventions based on theories of
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Acknowledgements: This study was supported financially by a PhD support grant from the former Northern Primary Care Research Network and the University of Sunderland. We acknowledge the support of the GP practices and Primary Care Research Network (Northern and Yorkshire) who assisted with participant recruitment, all the members of the study steering group and, in particular, our participants.