Department of Life, Health and Environmental Sciences, University of L'Aquila, Piazzale Salvatore Tommasi 1, Coppito (Aq), L'Aquila 67100, Italy.
Health Qual Life Outcomes. 2013 Dec 5;11:204. doi: 10.1186/1477-7525-11-204.
Celiac 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.
We 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.
The 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".
Our 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.
乳糜泻（CD）是一种日益常见的自身免疫性疾病。它需要严格终身遵循无麸质饮食（GFD），这会影响与健康相关的生活质量（HRQOL）。本研究评估了 CD 患儿和青少年的 HRQOL，并探讨了几种人口统计学和临床特征以及 GFD 依从性如何影响他们对健康状况的感知。
我们招募了 140 名经小肠活检证实的 CD 连续患儿和青少年。使用 SF-12 问卷评估 HRQOL，并结合一些探索幸福感和生活方式的 CD 特异性问题。儿科胃肠病学家识别出年龄在 10 至 18 岁的患者，并由经过培训的心理学家指导他们填写问卷。适当地应用了参数或非参数检验来分析连续变量和频率。
SF-12 平均心理成分综合评分（MCS12）低于意大利一般人群（p<0.001），而在身体健康方面的差异无统计学意义（p=0.220）。接受采访的人中，超过三分之一的人表示因为必须遵循 GFD，他们经常或大多数时间感到愤怒，将近 20%的人表示因为 CD，他们经常或大多数时间感到与他人不同且被误解。
我们的研究结果强调了卫生专业人员需要识别出患有重大疾病相关问题的青少年。食品行业应改善其无麸质食品产品范围，公共机构和机构应开展宣传活动，帮助提高 CD 患儿和青少年的整体生活质量。
