Characteristics and Clinical Management of Eosinophilic Esophagitis in Australia: A National Survey

Eosinophilic esophagitis (EoE) is a chronic inflammatory condition characterised by recurrent dysphagia and abdominal pain and eosinophilic-predominant inflammation within the oesophagus. EoE affects all ages and is increasing in incidence and prevalence worldwide. First-line treatment may be pharmacological and/or dietary elimination [1]. Present knowledge and understanding of characteristics and current treatment of patients with EoE stems from research describing cohorts in Europe and North America, however, data on the characteristics of children and adult patients with EoE in Australia is currently limited [2]. This study aimed to explore symptoms, conditions and experiences with treatment of Australians with EoE. Two questionnaires were designed, one for adults (≥ 16 years) and one for parents of children (< 16 years) with EoE, to explore symptoms, diagnosis and management. An email invitation was sent to members of the Australian eosinophilic disease support network (ausEE) using the online survey tool ‘Survey Monkey’ (Survey Monkey Inc. California, USA). Basic demographic data were tabulated, and descriptive statistics was conducted using the SPSS statistical analysis software (IBM Australia Ltd., Sydney, Australia). Percentage responses were calculated based on the number of participants completing the question. This study was approved by the Sydney Local Health District Human Research Ethics Committee (#X15-0169 & LNR/15/RPAH/229). Additional information about Methods, Results, Discussion, Supporting Information and Figures, and are available at https://doi.org/10.71747/uow-r3gk326m.28765730.v1. A total of N = 46 adults and N = 75 parents of children attempted the questionnaire, providing an approximate response rate of 15% of members (Table 1). Most individuals with EoE were male (2:1 ratio), diagnosed in early childhood with 46% diagnosed at less than six years of age. Almost half (48%) of parents of children with EoE reported vomiting as the reason for their child's first endoscopy, whilst a third of adult respondents reported food impaction as the reason for their first endoscopy. 4 (6) 6 (8) 2 (3) Australians with EoE reported experiencing similar symptoms to those previously reported in other Western cohorts [3, 4] with children primarily describing daily abdominal pain (24%) and reflux (23%) and adults, globus sensation (43%) and dysphagia (35%). Asthma, eczema and allergic rhinitis were reported to occur in approximately half of all participants. They also described functional gastrointestinal symptoms including nausea (30%), bloating (29%) and constipation (30%) in children, and reflux (27%), abdominal pain (27%) and bloating (30%) in adults. Extra-intestinal symptoms included behavioural changes (29%), sleep disturbance (24%) and fatigue (23%) in children. Fatigue (24%) and headaches (24%) were also reported in adults. Anxiety and/or depression were reported in 13% of children. Apart from sleep disturbances [5, 6], these symptoms have not been previously well-reported in an EoE population. Dietary and medical strategies as a means of management appeared to be equally common. Just over half of the participants reported they were currently following a restricted diet. A six-food elimination diet (excluding wheat, dairy, nuts, soy, egg and seafood) was the most common dietary therapy (54%). Interestingly, a ‘self-selected’ diet, based on foods individuals had identified to trigger symptoms was also common (30%). Symptomatic improvement was reported by the majority following a restricted diet. However, most participants did not specify or were unsure of histological changes with dietary modification. The average reported diet duration in children was 16 months, with the mean duration of exclusive elemental formula use being 12 months. Prolonged and self-imposed dietary restrictions raise concerns about nutritional adequacy due to the impact on intake of essential micronutrients, highlighting the necessity of growth/weight monitoring by all health professionals involved in the care of individuals, especially children, with EoE. Additionally, health professionals should be aware that these individuals may be following self-imposed dietary restrictions, and referral to a dietitian for nutrition assessment, education for replacement foods and monitoring of nutrient intake is important [7]. Of the N = 82 participants following a restricted diet, 61% reported completing a challenge or reintroducing food, with symptoms (48%) being the most commonly used method to identify a food trigger, despite guidelines recommending a repeat oesophageal biopsy [8]. There is a well-recognised disassociation between symptoms and histological activity in EoE, and a lack of symptoms cannot assume a lack of histological activity [9]. A repeat biopsy is indicated after the reintroduction of a single or two foods for six to eight weeks; [8] however, our results highlight that this approach has limited clinical feasibility and does not meet patient preferences. Transition to emerging alternatives to endoscopy are needed [1]. The use of survey techniques in this study was useful in providing descriptive information on symptoms, associated conditions, allergen sensitisation testing results and family history. The low response rate (15%) and self-reported nature of the survey present a limitation and may have introduced recall bias. Additionally, it must be acknowledged that individuals that join a support group may be different to the broader Australian EoE population. In summary, Australian children and adults with EoE, who are members of a support group, are characteristically similar to other Western populations describing symptoms of reflux, vomiting, dysphagia and food impaction as well as concomitant asthma, eczema and allergic rhinitis. They also describe functional gastrointestinal-type symptoms and unique symptoms of fatigue and behavioural problems. Reports of anxiety and depression amongst children with EoE also highlight the psychological impact of the disease. Self-imposed dietary restriction and limited food reintroduction also present concerns in relation to nutritional adequacy. A.C. and R.L. conceived the project. A.C., A.S., E.B., V.S. and R.L. designed the project. A.C. acquired the data, analysed and interpreted the data. A.C. wrote the paper. All authors reviewed and contributed to the final manuscript. The authors declare no conflicts of interest. The data that support the findings of this study are available from the corresponding author upon reasonable request.