Gallegos Danielle, McLaren-Kennedy Annette, Lang Ray, Thapar Nikhil, Mealing Sasha
Centre for Childhood Nutrition Research, Queensland University of Technology (QUT), Graham St, South Brisbane, 4101, Australia.
School of Exercise and Nutrition Sciences, Queensland University of Technology (QUT), Victoria Park Rd, Kelvin Grove, 4059, Australia.
Dig Dis Sci. 2025 Feb;70(2):516-525. doi: 10.1007/s10620-024-08761-7. Epub 2025 Jan 6.
Coeliac Disease (CD) affects up to 1.4% of children worldwide, with a rising global incidence. A less typical clinical presentation and the need for a life-long gluten exclusion diet raise challenges for diagnosis, management, and healthcare delivery with considerable impacts for CD patients and families as well as clinical services.
To explore the lived experiences of caregivers of children with CD to identify barriers and enablers to diagnosis, referral, and treatment to inform a more streamlined service delivery model.
Semi-structured interviews with caregivers of children with CD diagnosed for at least one month with no significant co-morbidities. Interviews were thematically analyzed.
Sixteen participants representing 12 family units were interviewed. Children with CD ranged in age from 3 to 18 years. Time from symptom onset to diagnosis varied from one month to > 10 years and symptoms were mainly atypical and non-specific. Six key themes were identified: the iterative diagnosis journey, restricted choices, child responsibility and autonomy, mental load (encompassing foodwork, emotional rollercoaster, and lack of trust), Google™ reigns for information, and where to from here?
There is a need to decentralize CD diagnosis and management to meet the increasing demand created by rising incidence. Participants highlighted the need for a more streamlined diagnosis pathway, increased training of health professionals, and access to age-appropriate resources. Efforts need to be made to advocate for increased community awareness. These insights will be used to reimagine and co-design a decentralized model of care for pediatric CD diagnosis and management in Queensland, Australia.
乳糜泻（CD）影响着全球多达1.4%的儿童，且全球发病率呈上升趋势。其不太典型的临床表现以及终身排除麸质饮食的需求给诊断、管理和医疗服务带来了挑战，对CD患者及其家庭以及临床服务都产生了重大影响。
探讨CD患儿照料者的生活经历，以确定诊断、转诊和治疗的障碍与促进因素，为更简化的服务提供模式提供依据。
对确诊至少1个月且无重大合并症的CD患儿照料者进行半结构式访谈。对访谈进行主题分析。
对代表12个家庭单位的16名参与者进行了访谈。CD患儿年龄在3至18岁之间。从症状出现到诊断的时间从1个月到超过10年不等，症状主要是非典型和非特异性的。确定了六个关键主题：反复的诊断过程、选择受限、儿童的责任与自主权、心理负担（包括饮食事务、情绪起伏和缺乏信任）、谷歌主导信息获取、以及何去何从？
有必要将CD的诊断和管理去中心化，以满足发病率上升带来的日益增长的需求。参与者强调需要更简化的诊断途径、加强对卫生专业人员的培训以及获取适合年龄的资源。需要努力提高社区意识。这些见解将用于重新构想和共同设计澳大利亚昆士兰州儿科CD诊断和管理的去中心化护理模式。
