Dowhaniuk Jenna K, Mileski Heather, Saab Joanne, Tutelman Perri, Thabane Lehana, Brill Herbert
Department of Pediatrics, McMaster University, Hamilton, Ontario, Canada.
McMaster Children's Hospital, Hamilton Health Sciences Ontario, Canada.
J Can Assoc Gastroenterol. 2020 Apr;3(2):67-73. doi: 10.1093/jcag/gwy067. Epub 2018 Dec 12.
A strict, lifelong, gluten-free diet (GFD) remains the sole treatment for celiac disease (CD). The assessment of adherence to the GFD in pediatric studies is often based on self-report and visual analogue scales which lack proven validity. We sought to compare parental-report of GFD adherence to expert registered dietitian (RD) assessments, the best available standard.
Parents of children with biopsy-proven CD scored their adherence to the GFD on a five-point Likert scale similar to that used in previous pediatric CD studies. Each family was then evaluated by an RD expert in CD management who conducted a comprehensive and standardized assessment and scored the family's adherence. The agreement between parents and the RD was assessed using paired t test and intraclass correlation coefficient (ICC) based on their scores.
One hundred twenty-two children and their families participated in the study, with a median of 32 months on a GFD. Excellent adherence (score 5 out of 5) was attributed to 60.5% of the sample by the RD. The parents scored adherence higher than the RD by an average difference of 0.41 scale points (95% CI, 0.28-0.54; < 0.001). The agreement between parents and the registered dietitian was poor (ICC = 0.21).
Reliance on self-report through Likert scales for GFD adherence overestimates adherence and misses opportunities for patient and family education. Approximately 40% of children with CD have ongoing gluten exposure, highlighting the need for regular assessment by an RD expert in the GFD to identify education and counselling needs for children with CD.
严格的终身无麸质饮食（GFD）仍然是乳糜泻（CD）的唯一治疗方法。在儿科研究中，对GFD依从性的评估通常基于自我报告和视觉模拟量表，而这些方法缺乏已证实的有效性。我们试图比较家长报告的GFD依从性与专家注册营养师（RD）的评估结果，后者是现有的最佳标准。
经活检证实患有CD的儿童的家长，按照与先前儿科CD研究中使用的类似的五点李克特量表，对他们对GFD的依从性进行评分。然后，由一位CD管理方面的RD专家对每个家庭进行评估，该专家进行全面且标准化的评估，并对家庭的依从性进行评分。基于家长和RD的评分，使用配对t检验和组内相关系数（ICC）来评估两者之间的一致性。
122名儿童及其家庭参与了研究，平均进行GFD饮食32个月。RD将60.5%的样本评定为依从性极佳（5分制中得5分）。家长评分的依从性比RD高，平均差异为0.41个量表点（95%CI，0.28 - 0.54；P < 0.001）。家长与注册营养师之间的一致性较差（ICC = 0.21）。
依靠李克特量表进行GFD依从性的自我报告高估了依从性，并且错失了对患者和家庭进行教育的机会。约40%的CD患儿仍持续接触麸质，这凸显了需要由RD专家对GFD进行定期评估，以确定CD患儿的教育和咨询需求。
