Eluri Swathi, Book Wendy M, Kodroff Ellyn, Strobel Mary Jo, Gebhart Jessica H, Jones Patricia D, Menard-Katcher Paul, Ferris Maria E, Dellon Evan S
*Department of Gastroenterology and Hepatology, University of North Carolina School of Medicine, Chapel Hill †American Partnership for Eosinophilic Disorders, Atlanta, GA ‡Campaign Urging Research for Eosinophilic Disease, Cincinnati, OH §Department of Gastroenterology and Hepatology, University of Miami Miller School of Medicine, FL ||Department of Gastroenterology and Hepatology, University of Colorado Anschutz Medical Campus, Aurora ¶Pediatric Nephrology, University of North Carolina at Chapel Hill.
J Pediatr Gastroenterol Nutr. 2017 Jul;65(1):53-57. doi: 10.1097/MPG.0000000000001415.
A growing population of adolescents/young adults with eosinophilic esophagitis (EoE) and eosinophilic gastroenteritis (EGE) will need to transition from pediatric to adult health providers. Measuring health care transition (HCT) readiness is critical, but no studies have evaluated this process in EoE/EGE. We determined the scope and predictors of HCT knowledge in patients and parents with EoE/EGE and measured HCT readiness in adolescents/young adults.
We conducted an online survey of patients 13 years or older and parents of patients with EoE/EGE who were diagnosed when 25 years or younger. Parents answered questions regarding their children and their own knowledge of HCT. HCT readiness was assessed in adolescents/young adults aged 13 to 25 years with the Self-Management and Transition to Adulthood with Rx Questionnaire (a 6-domain self-report tool) with a score range of 0 to 90.
Four hundred fifty participants completed the survey: 205 patients and 245 parents. Included in the analysis (those diagnosed with EoE/EGE at age 25 years or younger) were 75 of 205 patients and children of 245 parent respondents. Overall, 78% (n = 52) of the patients and 76% (n = 187) of parents had no HCT knowledge. Mean HCT readiness score in adolescents/young adults (n = 50) was 30.4 ± 11.3 with higher scores in domains of provider communication and engagement during appointments. Mean parent-reported (n = 123) score was 35.6 ± 9.7 with higher scores in medication management and disease knowledge.
There was a significant deficit in HCT knowledge, and HCT readiness scores were lower than other chronic health conditions. HCT preparation and readiness assessments should become a priority for adolescents/young adults with EoE/EGE and their parents.
越来越多患有嗜酸性粒细胞性食管炎（EoE）和嗜酸性粒细胞性胃肠炎（EGE）的青少年/青年需要从儿科医疗服务提供者过渡到成人医疗服务提供者。衡量医疗保健过渡（HCT）准备情况至关重要，但尚无研究评估EoE/EGE患者的这一过程。我们确定了EoE/EGE患者及其父母的HCT知识范围和预测因素，并对青少年/青年的HCT准备情况进行了评估。
我们对13岁及以上的患者以及25岁及以下被诊断为EoE/EGE的患者的父母进行了在线调查。父母回答了有关他们孩子以及他们自己对HCT的了解的问题。使用自我管理与药物治疗向成年期过渡问卷（一种6个领域的自我报告工具，得分范围为0至90）对13至25岁的青少年/青年的HCT准备情况进行评估。
450名参与者完成了调查：205名患者和245名父母。纳入分析的（25岁及以下被诊断为EoE/EGE的患者）是205名患者中的75名以及245名父母受访者的孩子。总体而言，78%（n = 52）的患者和76%（n = 187）的父母没有HCT知识。青少年/青年（n = 50）的HCT准备情况平均得分是30.4 ± 11.3，在预约期间与医疗服务提供者沟通和互动领域得分较高。父母报告的平均得分（n = 123）是35.6 ± 9.7，在药物管理和疾病知识领域得分较高。
HCT知识存在显著不足，且HCT准备情况得分低于其他慢性健康状况。HCT准备和评估应成为患有EoE/EGE的青少年/青年及其父母的优先事项。
