Documenting the Journey of Patients with Eosinophilic Esophagitis and the Impact of the Disease on Patients and their Ca
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ORIGINAL RESEARCH
Documenting the Journey of Patients with Eosinophilic Esophagitis and the Impact of the Disease on Patients and their Caregivers: A Cross-sectional, Qualitative Research Study Robin M. Pokrzywinski . Gale Harding . Anne Brooks . Bridgett Goodwin . James Williams
Received: March 24, 2020 Ó The Author(s) 2020
ABSTRACT Introduction: Eosinophilic esophagitis (EoE) is a chronic, immune-mediated esophageal disease for which there is currently no approved treatment in the USA and only one approved therapy in Europe. EoE can significantly affect the lives of patients and caregivers; however, little has been published about patients’ experiences from symptom onset to diagnosis and treatment. Methods: This was a cross-sectional, qualitative research study. During one-on-one semi-structured interviews, patients with EoE in the USA and their caregivers provided information about their experiences of EoE before and during diagnosis, and their current experiences. Qualitative data were analyzed using a content analysis approach.
Digital Features To view digital features for this article go to https://doi.org/10.6084/m9.figshare.12746657. Electronic Supplementary Material The online version of this article (https://doi.org/10.1007/s12325020-01463-2) contains supplementary material, which is available to authorized users. R. M. Pokrzywinski (&) G. Harding A. Brooks Evidera, Bethesda, MD, USA e-mail: [email protected] B. Goodwin J. Williams Shire, a Takeda company, Cambridge, MA, USA
Results: The study included children aged 6– 11 years with EoE (n = 4) and their caregivers (n = 4); adolescents aged 12–17 years with EoE (n = 7) and their caregivers (n = 7); and adults aged C 18 years with EoE (n = 20). The diagnosis of EoE was often arduous and took many years. Patients and caregivers were frequently frustrated with the complexities of diagnosing EoE, which often involved multiple healthcare providers and procedures. Patients reported physical and psychosocial burdens associated with EoE before diagnosis, including interference with social activities, school, and work. Patients also reported feeling frustrated or anxious. These burdens frequently remained after diagnosis. Caregivers also reported anxiety and, in some cases, interference with their ability to work. Conclusion: This study of EoE describes the difficult journey faced by patients and their caregivers from symptom onset to diagnosis and beyond. Keywords: Caregiver; Diagnosis; Disease burden; Eosinophilic esophagitis; Healthrelated quality of life; Outcomes research; Patient journey
Adv Ther
Key Summary Points Why carry out this study? Eosinophilic esophagitis (EoE) is a chronic, immune-mediated disease, which can significantly affect the lives of patients and caregivers; however, little has been published about patients’ experiences from symptom onset to diagnosis and treatment. The objective of this study was therefore to improve our understanding of the clinical and humanistic burden on patients with EoE and their caregiver
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