Haj-Ahmad Laith M, Alqaisi Abida, Altamimi Eyad
College of Medicine, The University of Jordan, Amman, JOR.
Language and Translation Department, The Celiac Care Provider Society, Amman, JOR.
Cureus. 2024 Nov 25;16(11):e74395. doi: 10.7759/cureus.74395. eCollection 2024 Nov.
Celiac disease profoundly impacts individuals' daily lives, prompting the need to assess health-related quality of life (HRQoL) in affected children. This study aimed to evaluate HRQoL among Jordanian children with celiac disease, considering sex, dietary adherence, presence or absence of growth issues, concurrent chronic diseases, and duration since diagnosis.
A cross-sectional study invited children from the Celiac Disease Care Providers Society to complete an online Kidscreen-52 questionnaire in Arabic. Descriptive statistics and T-scores for 10 health domains were analyzed against international benchmarks. Cohorts were stratified by concurrent diseases, disease duration, dietary adherence, and growth issues, with comparisons made using t-tests and Cohen's ds.
Among 400 registered members, 126 children (31.5%) participated. Males exhibited inferior HRQoL in multiple domains compared to the general population, with recent studies corroborating findings in females. Males with chronic diseases reported significantly worse moods and self-perception. Females with growth issues faced academic challenges and financial constraints, while those not strictly adherent to a gluten-free diet reported strained parental relationships and challenges in their home environment.
This study reveals a marked decline in HRQoL among Jordanian children with celiac disease, emphasizing the need for educational initiatives targeting patients and healthcare providers, alongside broader advocacy for gluten-free diet support. Further research is imperative to identify additional contributing factors and implement community-level interventions.
乳糜泻对个人日常生活产生深远影响，这促使有必要评估患病儿童的健康相关生活质量（HRQoL）。本研究旨在评估约旦乳糜泻患儿的健康相关生活质量，同时考虑性别、饮食依从性、是否存在生长问题、并发慢性病情况以及确诊后的病程。
一项横断面研究邀请了乳糜泻护理提供者协会的儿童用阿拉伯语在线填写Kidscreen - 52问卷。针对10个健康领域的描述性统计数据和T分数与国际基准进行了分析。根据并发疾病、病程、饮食依从性和生长问题对队列进行分层，并使用t检验和科恩d值进行比较。
在400名注册会员中，126名儿童（31.5%）参与了研究。与一般人群相比，男性在多个领域的健康相关生活质量较差，近期研究也证实了女性的相关结果。患有慢性病的男性报告情绪和自我认知明显更差。有生长问题的女性面临学业挑战和经济限制，而那些未严格遵循无麸质饮食的女性报告称亲子关系紧张且家庭环境存在挑战。
本研究揭示约旦乳糜泻患儿的健康相关生活质量显著下降，强调需要针对患者和医疗服务提供者开展教育倡议，同时更广泛地倡导无麸质饮食支持。必须进行进一步研究以确定其他影响因素并实施社区层面的干预措施。
