Abstract
Objectives: The incidence and the prevalence of eosinophilic esophagitis (EoE) are increasing, and healthcare utilization among children with EoE is high. This study provides novel insights into the health services and the treatments, including complementary medicines (CMs), used by carers to manage their children's EoE as well as the carers' beliefs and attitudes toward these treatments.Methods: A national cross-sectional online survey was conducted in Australia between September 2018 and February 2019. The survey included questions about health service and treatment utilization, health insurance and government support, health-related quality of life of children with EoE and their carers, views and attitudes toward CM use, and perceived efficacy of treatment.Results: The survey was completed by 181 carers (96.6% of whom were mothers) of EoE children. Most children (91.2%, n = 165) had seen a medical doctor for their EoE, and almost half had consulted with a CM practitioner (40.3%, n = 73). Pharmaceuticals (n = 156, 86.2%) were the most commonly used treatment option, followed by dietary changes (n = 142, 78.5%), CM products (n = 109, 60.2%), and CM therapies (n = 42, 23.2%). Most children received care from numerous practitioners on multiple occasions, indicating a substantial financial and treatment-related burden.Conclusions: A variety of practitioners are involved in the care of children with EoE, and a high rate of CM use warrants further attention to ensure that appropriate treatment is provided. Carer involvement and guidance, combined with individual practitioner expertise, referrals, and collaboration between providers, is essential to successfully navigate this complex disease and provide adequate care for these patients.
Highlights
Eosinophilic esophagitis (EoE) is a rare antigen-driven inflammatory gastrointestinal disorder characterized by elevated levels of eosinophils in the esophagus, esophageal dysfunction, and gastrointestinal symptoms [1]
Research suggests that complementary medicine (CM), a diverse range of medical and healthcare practices and products not currently regarded as part of conventional medicine [11], may be included in the range of healthcare accessed by carers of children diagnosed with gastroenterological conditions in Australia [12] and abroad [13]
Thirty-five incomplete responses were removed, as well as those that did not meet the inclusion criteria (n = 16). These included responses with no confirmed EoE diagnosis (n = 12), residence outside of Australia (n = 1), completion by an EoE child instead of their parent (n = 2), and child whose age is over 18 years (n = 1)
Summary
Eosinophilic esophagitis (EoE) is a rare antigen-driven inflammatory gastrointestinal disorder characterized by elevated levels of eosinophils in the esophagus, esophageal dysfunction, and gastrointestinal symptoms [1]. While there are no national guidelines in Australia for the management of EoE, international guidelines are usually applied [9]. Research suggests that complementary medicine (CM), a diverse range of medical and healthcare practices and products not currently regarded as part of conventional medicine [11], may be included in the range of healthcare accessed by carers of children diagnosed with gastroenterological conditions in Australia [12] and abroad [13]. In order to address EoE symptoms, carers may choose CMs for their children, under the assumption that CMs are safe [14, 15]; to our knowledge, no research has examined all healthcare accessed for pediatric EoE, including CM. This study is the first to describe the health services and the treatments, including CMs, used by carers to manage their children’s EoE as well as the carers’ beliefs and attitudes toward these treatments
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