EoE should be diagnosed when there are symptoms of esophageal dysfunction and at least 15 eosinophils per high-power field (or approximately 60 eosinophils per mm) on esophageal biopsy and after a comprehensive assessment of non-EoE disorders that could cause or potentially contribute to esophageal eosinophilia. The evidence suggests that PPIs are better classified as a treatment for esophageal eosinophilia that may be due to EoE than as a diagnostic criterion, and we have developed updated consensus criteria for EoE that reflect this change.
Parents of children with EoE aged 3 to 18 years accurately reflected their children's disease symptoms and QOL. Self- and parent-reported symptoms correlate with proximal esophageal histology. Our data suggest that parental report in young children can function as an adequate marker for self-reported symptoms and that self-reported symptoms can reflect changes in tissue histology in the proximal esophagus. These findings should be considered during clinical trials for drug development.
Individuals affected by EGIDs have a constellation of complex unmet needs and perceived barriers across medical, healthcare, social and emotional domains. Addressing unmet needs in the medical domain is relatively more important for the EGID community. Understanding unmet needs and barriers will likely help design improved patient-centered EGID care paradigms.
Objectives
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 healthcare 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.
Methods
We conducted an online survey of patients ≥13 years and parents of patients with EoE/EGE who were diagnosed when ≤25 years of age. Parents answered questions regarding their children and their own knowledge of HCT. HCT readiness was assessed in adolescents/young adults aged 13-25 years with the Self-Management and Transition to Adulthood with Rx (STARx) Questionnaire (a six domain self-report tool) with a score range of 0-90.
Results
450 participants completed the survey: 205 patients and 245 parents. Included in the analysis (those diagnosed with EoE/EGE at age ≤25 years) 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.
Conclusions
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.
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