Health-related quality of life in children and adolescents with celiac disease: survey of a population from central Italy

Abstract

BackgroundCeliac Disease (CD) is an increasingly common autoimmune disorder. It requires a strict lifelong adherence to a gluten-free diet (GFD) which can influence health-related quality of life (HRQOL). This study assesses HRQOL in children and adolescents with CD and explores how several demographic and clinical characteristics and GFD adherence affect their perceived health status.MethodsWe recruited 140 consecutive children and adolescents with CD confirmed by small bowel biopsy. HRQOL was assessed using the SF-12 questionnaire plus some CD-specific questions exploring wellbeing and lifestyle. Patients, aged 10 to 18 years, were identified by pediatric gastroenterologists and guided in filling out the questionnaire by trained psychologists. Parametric or non-parametric tests were applied to analyze continuous variables and frequencies as appropriate.ResultsThe SF-12 mean mental component summary score (MCS12) was lower than in the general Italian population (p < 0.001), whereas differences in terms of physical health were not significant (p = 0.220). More than one third of those interviewed reported feeling angry “always” or “most of the time” about having to follow the GFD, and nearly 20% reported feeling different from others and misunderstood because of CD “always” or “most of the time”.ConclusionsOur findings highlight the need for health professionals to identify adolescents with major disease-related problems. The food industry should improve its range of gluten-free food products and public bodies and institutions should promote informative campaigns and help promote the overall quality of life of children and adolescents with CD.

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

“…Altobeli et al . compared generic HRQoL scores of 64 Italian teenagers with CD (14–18 years; mean age 14.2 years) to normative data from 3221 adolescents (14–17 years) using the validated SF‐12 tool. Although teenagers with CD scored lower for mental health scores compared to the control population ( P < 0.001), neither compliance, nor perceived difficulty of compliance was associated with this score.…”

Quality of life in children with celiac disease: A paediatric cross-sectional study

“…In children, as well as in adults, a chronic illness, like CD, may interfere with daily life and impact QOL. So using different instruments [9][10][11][12]. By using a qualitative method of research, the Critical Incident Technique, we recently reported on the impact of the GFD on daily life of children with treated CD.…”

Quality of life in celiac disease and the effect of gluten‐free diet

“…The stigma of a chronic disorder and the need for major dietary restrictions increase the self‐perceived burden of illness and may adversely affect patient's QOL. In patients with celiac disease (CD), poor adherence to gluten‐free diet (GFD), social and economic issues associated with lifelong GFD, associated medical comorbidities, and several intestinal as well as extraintestinal symptoms in CD are also associated with a poor HR‐QOL . Both generic (general) and individual (specific) tools can be used to measure the HR‐QOL in CD .…”