Coeliac disease in adolescence: Coping strategies and personality factors affecting compliance with gluten-free diet
Introduction
Coeliac disease (CD) is an autoimmune mediated disease that occurs as the result of an immune response to gluten, which – left untreated – leads to intestinal malabsorption and atrophy of the duodeno-jejunal mucosa. Prevalence rates range from 1:100 when patients are diagnosed by screening methods to 1:1000 when diagnosed according to symptoms. Ten to 20% of those affected experience full symptomatology such as diarrhea, vomiting, weight loss, abdominal distention, abdominal pain, and in the long run failure to thrive, small stature, pubertas tarda, as well as psycho-motoric and psychosocial developmental disorders (Di Sabatino and Corazza, 2009, Holtmeier et al., 2005). Complications are an early onset of osteoporosis, increased risk of abortions and intestinal lymphoma (Vogelsang, Propst, Dragosics, & Granditsch, 2002). The only available treatment is a lifelong gluten free diet (GFD) that requires avoidance of wheat, rye and barley leading to symptomatic, serologic and histologic remission (Green & Jabri, 2006). Strict adherence to this diet is essential to prevent long-term complications and represents the cornerstone in the therapy of CD (Troncone, Auricchio, & Granata, 2008), whereas untreated CD can lead to serious and potentially life-threatening long-term health complications (Green and Jabri, 2003, Rubio-Tapia and Murray, 2010).
Compliance to GFD is extremely variable and ranges between 36% and 95% (Errichiello et al., 2010, Hall et al., 2009, Mazzone et al., 2011, Rashid et al., 2005, Roma et al., 2010). Difficulties with dietary compliance have been reported especially for adolescents (Edwards George et al., 2009, Kautto et al., 2014). Reported barriers to GFD include inferior taste of gluten-free food, inaccurate food labelling, absence of symptoms after dietary transgressions and psychological problems (Edwards George, et al., 2009). No association between dietary transgressions has been found with demographic or disease-inherent factors, concluding that cognitive and emotional characteristics might influence GFD adherence (Hall et al., 2009).
Chronic illness confronts a patient with numerous threats and challenges. Strategies need to be developed in order to preserve emotional balance, satisfactory self-image, and a sense of competence and mastery. Especially in children with CD, the introduction of a gluten-free diet results in a radical change of eating habits and lifestyle, and it can be hard to accept and stressful to follow (Mazzone et al., 2011).
During adolescence, peer-group orientation and engagement in risk-taking behaviours are typical and can lead to harmful consequences in the context of treatment and compliance. Strictly adhering to GFD requires constant attention and higher control around food, with greater effortful control and monitoring of labels of food ingredients, relying on limited (e.g. ‘free from’) food ranges in the supermarket, and needing to pay close attention to ingredients and having limited meal options when eating in social contexts, for example in a restaurant. This can be particularly challenging in transitional periods as adolescence (Edwards George, et al., 2009). Difficulties with adherence to GFD are most prominent in the peer-group environment, and less so within the family environment (Cinquetti et al., 1999).
“Coping”, broadly defined as a behaviour to manage stressful situations, may have an impact on or modify adherence to GFD, however very few studies have examined this and studies are mainly limited to adult populations. Coping is considered to be a complex process of cognitive, behavioural, and emotional responses to stress which is not caused by the event itself, but by its cognitive evaluation (Skala & Bruckner, 2014). An individual's coping strategy may be adaptive or maladaptive. Trying to find a solution to one's problems i.e. is regarded as a task-oriented coping strategy, whereas screaming and other externalizing aggressive behaviour is considered as emotional coping. Increased task-oriented coping combined with decreased emotion-oriented coping is considered as an adaptive and the reverse as a maladaptive coping style (Sainsbury, Mullan, & Sharpe, 2013a). Findings suggest an association between emotion-focused coping strategies and poor illness adjustment in general, as well as avoidant coping and withdrawal from social support and poor adherence to treatment (Seiffge-Krenke, 2001). This contrasts the assumption that a broader coping repertoire, consisting of both problem-focused and emotion-focused strategies, increases the possibility of a matching response to the particular demands of a stressful situation (Taylor, 1999). Effective coping strategies improve emotional, physical, and social functioning, as well as quality of life (de Ridder & Schreurs, 2001). Adolescents strict adhering to GFD do not differ from adolescents without a chronic disease with respect to their quality of life in different areas including family, school, peer group and general wellbeing (Wagner et al., 2008).
When analysing psychological factors in treatment adherence, previous research indicates that personality traits should be included. It has been hypothesized, that identifiable personality traits might moderate reactions to a diagnosis of CD and facilitate or impede adherence to GFD in individuals with CD (Rashid et al., 2005). For example, adult individuals with higher conscientiousness, i.e. an overall tendency to plan and be organized in carrying out daily tasks, have been found to be more adherent with GFD (Edwards George, et al., 2009). Despite this, no studies to-date have included personality features and coping in adolescents with CD.
Therefore, the aim of our study was to assess coping strategies applied in disease specific situations and personality dimensions in adolescents with biopsy-proven CD and to compare patients adherent and not adherent to GFD.
Section snippets
Procedure
Recruitment for this study was part of a larger project on eating pathology and quality of life in adolescents with CD, which is described in full elsewhere (Karwautz et al., 2008, Wagner et al., 2008). The study protocol was approved by the Medical University of Vienna's Ethics Committee and written consent was obtained from participants and their parents in the case of minors. Inclusion criteria for involvement were: age range from 10 to 20 years, a CD diagnosis verified by a duodenal biopsy
Participants
We included 281 children and adolescents with biopsy-proven CD and 95 controls. Demographic data and CD characteristics are given in Table 1.
Austrian and German participants did not differ regarding their basic socio-demographic CD-specific parameters except mean age, mean duration of illness and frequency of last positive EMA, with Austrian participants being significantly older, and having a higher percentage of last positive EMA and the German participants having a longer duration of CD. CD
Discussion
To our knowledge, this is the first study comparing coping strategies and personality factors in adolescents with CD adherent vs. non-adherent to GFD. Overall we found nineteen percent of the adolescents did not strictly adhere to GFD. The adhering patients showed less use of emotional and avoiding coping strategies, and were lower in impulsivity and higher in perfectionism than GFD non-adhering peers.
Our first result, that the coping strategies “emotional regulation” and “distraction” were
Strengths and limitations
The strengths of this study are a high number of adolescents with biopsy-proven CD, sufficient to detect medium effects in differences between patients adherent and non-adherent to GFD, inclusion of healthy controls and application of well-defined psychological constructs contributing to the understanding of non-adherence within an age vulnerable to dietary transgressions, an area currently neglected in CD research.
One limitation might be the approach to patient recruitment. We approached
Conclusions
In adolescents with CD, adherence to GFD is related to unfavourable coping strategies and personality traits. This should be considered in the management of patients with CD, particularly in those not adherent to GFD. Especially for this subgroup, psychoeducation and behavioural training including coping skills training should be offered.
Conflict of interest
The authors report no conflict of interest.
Acknowledgements
We thank all of the patients, the cooperating centres (LKH Wels, LKH Klagenfurt, LKH Villach, Preyer'sches Kinderspital, LKH Graz, and LKH Salzburg), and the Austrian and German coeliac disease societies for their help in conducting the study. We also thank Dr. Helga Hürner and Dr. Ursula Sinnreich for their help in data collection and data entry.
This study was supported by a grant from the “Jubilaeumsfonds” of the National Bank of Austria (Grant Number: 11086) given to AK and GW.
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