Carer experiences and perspectives on healthcare utilisation, complementary medicine use, and treatment burden for paediatric eosinophilic oesophagitis in Australia

Abstract

Eosinophilic oesophagitis (EoE) is a rare antigen-driven inflammatory gastrointestinal disorder characterised by oesophageal dysfunction, elevated levels of eosinophils in the oesophageal mucosa, and gastrointestinal symptoms. EoE incidence and prevalence is increasing rapidly. EoE Incidence peaks in late childhood and healthcare utilisation amongst children with EoE is high. This study provides the first known research into carer experiences and perspectives on healthcare utilisation, including complementary medicine (CM) use, treatment burden, and impact on health-related quality of life (HRQoL) for children with eosinophilic oesophagitis (EoE) and their carers for paediatric EoE in Australia. Methods: A national cross-sectional online survey was conducted in Australia between 5th September 2018 and 28th February 2019. The survey instrument incorporated preexisting validated tools along with other adapted survey items. The 149-item survey instrument included 42 core items and a further 107 items controlled by adaptive survey logic across five domains: socio-demographics; health service and treatment utilisation; CM use; financial support; and HRQoL for the child and the carer. Convenience and snowball sampling were employed to achieve a sample broadly representative of the paediatric EoE population in Australia. Study participants were carers of children (aged 18 years and under) with endoscopy-confirmed diagnosis of EoE. Data were presented as descriptive statistics (frequencies, percentages and means). Univariate relationships were analysed using chi square tests, Cramer’s V, linear regression and one-way analysis of variance analysis. Multivariate relationships were examined using various regression analytic methods including linear and logistic backwards stepwise regression, binomial logistic regression, and poisson regression. Cronbach’s alpha was calculated to determine the internal reliability of the Bakas Caregiving Outcomes Scale© for this study. Results: The survey was completed by 181 carers (mother, 96.6%) of an EoE child. Most children (91.2%, n=165) had seen a medical doctor and many had consulted with a CM practitioner (40.3%, n=73) for their EoE. 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, while more than half of carers (n=86, 56.2%) reported reduced HRQoL since their child’s diagnosis. Reported mean annual out-of-pocket expenditure for health-care utilisation (practitioner visits and treatment) was AUD$3064.3. Reduced ability to manage on income and missing more than one workday in the previous 30 days were significant predictors of lower carer HRQoL. Ability to manage on the current income described as “difficult some of the time”, “difficult all of the time”, and “impossible” were associated with lower child HRQoL. When compared with EoE diagnosis between 13 and 23 months old, diagnosis between two and four years old was a significant predictor of lowered child HRQoL. One-hundred sixty-five (91.2%) carers indicated they had utilised some form of CM for themselves and 125 (75.8%) of the carers using CM also reported using CM for their child’s EoE. Use of CM in children was more likely amongst children who had used a pharmaceutical for their EoE, and those whose carer had consulted with ‘other health practitioners or health workers’ for their child’s EoE or had consulted with a chiropractor for themselves. Conclusions: Paediatric EoE in Australia is associated with reduced HRQoL of children with EoE and their carers and significant treatment burden for carers. Further attention is required to identify ways to reduce treatment-related burden and improve the quality of life of both the carer and child. There is high CM use and substantial concomitant use of conventional medicines by children with EoE, despite no evidence for the safety and efficacy of the CM treatments commonly used. There is also the potential for complications from drug-herb and drug-nutrient interactions from using both conventional and CM treatments. Recommendations based on this research include better information for both clinicians (e.g. clinical guidelines, training) and carers (e.g. print and online information), improved care coordination and support services, and further research focusing on the safety and effectiveness of commonly used conventional and CM treatments and carer circumstances and beliefs related to caring for children with EoE.