Motivations, Barriers, and Outcomes of Patient-Reported Shared Decision Making in Eosinophilic Esophagitis.

BACKGROUND: Little is known about patient choice in treatment of eosinophilic esophagitis (EoE). AIM: Determine motivators and barriers to using common EoE therapies and describe patient-reported shared decision making (SDM) and satisfaction with treatment. METHODS: We developed and administered a Web-based survey on factors influencing EoE treatment choice, SDM, and satisfaction. Adults with EoE and adult caregivers of pediatric EoE patients were recruited via patient advocacy groups and at two centers. Descriptive statistics of multiple response questions and multivariable logistic regression were performed to identify predictors of SDM and satisfaction with treatment. RESULTS: A total of 243 adults (mean age 38.7 years) and 270 adult caregivers of children (mean age 9.5 years) completed the survey. Preventing worsening disease was the most common motivator to treat EoE. Barriers to topical steroids were potential side effects, cost, and preferring a medication-free approach. Inconvenience and quality of life were barriers to diet. Potential adverse events, discomfort, and cost were barriers to dilation. Nearly half (42%) of patients experienced low SDM, but those followed by gastroenterologists were more likely to experience greater SDM compared to non-specialists (OR 1.81; 95% CI 1.03-3.15). Patients receiving more SDM were more satisfied with treatment, regardless of provider or treatment type (OR 2.62, 95% CI 1.76-3.92). CONCLUSIONS: Patients with EoE pursue treatment mostly to prevent worsening disease. Common barriers to treatment are inconvenience and financial costs. SDM is practiced most by gastroenterologists, but nearly half of patients do not experience SDM, indicating a substantial area of need in EoE.

Emotional Journey of Patients with Eosinophilic Esophagitis.

INTRODUCTION: Eosinophilic esophagitis (EoE) is a chronic and progressive disease associated with dysphagia and eosinophilic infiltration of the esophageal mucosa. EoE can have a negative impact on a patient's quality of life (QoL); however, there is very limited data reflecting the emotional journey of patients with EoE or their perceived unmet needs. The aim of this study was to determine the emotional impact of EoE on patients at each stage of the patient journey. METHODS: In this cross-sectional and qualitative research study, adult patients with EoE from eight different countries provided their experiences and feelings across each stage of the patient journey through one-on-one semi-structured interviews. RESULTS: Twenty-one patients with EoE were enrolled in the study. The results of the one-on-one interviews showed that patients living with EoE go through an exhausting emotional experience during the different stages of the patient journey. In the pre-seeking-care stage, patients feel confused, afraid, frustrated, anxious, lonely, and misunderstood. During the diagnostic process, patients feel highly frustrated and angry because of the long and burdensome process. When EoE is finally diagnosed, patients feel liberated and relieved. When treatment is initiated, patients feel relief and enthusiasm, and, once the treatment starts to be effective and during the monitoring stage, they feel happier, less stressed, more confident, more relaxed, less fearful, and more in control owing to the improvement of their symptoms. CONCLUSIONS: This study pays attention to the different stages of the journey of patients with EoE. There is a lack of awareness by both physicians and patients that negatively affects every stage of the patient journey, but especially the initial phases of pre seeking care and diagnosis. We intend for this article to represent an opportunity to increase EoE awareness and to show the importance of considering the emotional impact on a patient with EoE's journey.

Individuals affected by eosinophilic gastrointestinal disorders have complex unmet needs and frequently experience unique barriers to care.

INTRODUCTION: Eosinophilic gastrointestinal disorders (EGIDs) are a rare but emerging healthcare problem. Patient advocacy groups (PAGs) have an important role in representing the EGID community, and serve as valuable research partners. By leveraging the partnership between medical researchers and PAGs, we examined the unmet needs and barriers to care perceived by individuals affected by EGIDs. Next, we examined if these varied between adult EGID patients and adult caregivers of children with EGID. METHODS: Adult EGID patients and adult caregivers of children (<18 years) with EGIDs participated in this study. PAGs conducted focus groups comprised of individuals affected by EGIDs to identify domains and questions meaningful to the EGID community and this information was used to develop an online REDCap survey. The survey consisted of 58 questions across medical, healthcare, social, and emotional impact domains. It was distributed via the PAGs' web-based platforms. Demographic data, and responses to questions on a six-point Likert scale were collected and analyzed. RESULTS: Of the 361 responses analyzed, 90 (25%) were from adult EGID patients and 271 (75%) were from adult caregivers. Of the applicable responses, in the medical domain only 19% of participants indicated that repeated endoscopies to monitor response to treatment was convenient. In the healthcare domain, 67% indicated that lack of insurance coverage for elemental formula was a barrier. In the social domain, only 5% of respondents reported adequate awareness of EGIDs in schools. In the emotional domain, 64% had experienced significant stress due to EGID related out-of-pocket costs. Multivariate logistic regression revealed that some of these responses varied between adult EGID patients and adult caregivers of children with EGID. The respondents indicated highest priority for improvement in the medical domain compared to other domains. CONCLUSIONS: 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.