ArticleClinics and research in hepatology and gastroenterology2018
Individuals affected by eosinophilic gastrointestinal disorders have complex unmet needs and frequently experience unique barriers to care.
Article in Clinics and research in hepatology and gastroenterology, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 39 papers.
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Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
39 citing papers in PubMed, 56 citations in OpenAlex.
- Benralizumab for eosinophilic gastritis: a single-site, randomised, double-blind, placebo-controlled, phase 2 trial.The lancet. Gastroenterology & hepatology · 2023Trial
- Anti-Siglec-8 Antibody for Eosinophilic Gastritis and Duodenitis.The New England journal of medicine · 2020Trial
- Mental Health in Eosinophilic Gastrointestinal Disorders: A Work Group Report of the AAAAI Eosinophilic Gastrointestinal Disorders Committee.The journal of allergy and clinical immunology. In practice · 2026Article
- Emerging Tissue and Blood Biomarkers for Eosinophilic Esophagitis.Gastroenterology clinics of North America · 2026Review
- Shared decision making in Eosinophilic esophagitis: Integrating physician and patient perspectives.PloS one · 2026Article
- Real-World Clinical Efficacy of Food and Drug Administration-Approved Budesonide Oral Suspension Across Histologic, Endoscopic, and Symptomatic Outcomes.Gastro hep advances · 2026Article
- Lessons learned: telehealth for patients with eosinophilic gastrointestinal diseases.Diseases of the esophagus : official journal of the International Society for Diseases of the Esophagus · 2025Article
- Criteria to evaluate unmet health-related needs of persons living with rare diseases and their caregivers: rapid literature review and stakeholder consultations.Orphanet journal of rare diseases · 2025Review
- Segmental overlap is common in eosinophilic gastrointestinal diseases and impacts clinical presentation and treatment.Diseases of the esophagus : official journal of the International Society for Diseases of the Esophagus · 2025Article
- Initial Validation of the Eosinophilic Gastritis and Gastroenteritis Quality of Life Scale.Gastro hep advances · 2025Article
- Experiences of quality of life and access to health services among rare disease caregivers: a scoping review.Orphanet journal of rare diseases · 2024Article
- Duodenal stenosis, an unusual presentation of eosinophilic gastroenteritis: a case report.Frontiers in pediatrics · 2024Article
- Article
- Eosinophilic gastroenteritis in an elderly men associated with antibiotic use post maxillofacial space infection: a case report.Frontiers in medicine · 2024Article
- Gastroenterology Practice Patterns Contribute to Missed Diagnoses of Eosinophilic Gastritis and Duodenitis.Gastro hep advances · 2023Article
- The Role of Benralizumab in Eosinophilic Immune Dysfunctions: A Case Report-Based Literature Review.Case reports in medicine · 2023Article
- International Consensus Recommendations for Eosinophilic Gastrointestinal Disease Nomenclature.Clinical gastroenterology and hepatology : the official clinical practice journal of the American Gastroenterological Association · 2022Article
- Eosinophilic Gastrointestinal Diseases Beyond the Esophagus: An Evolving Field and Nomenclature.Gastroenterology & hepatology · 2022Article
- A Single-Food Milk Elimination Diet Is Effective for Treatment of Eosinophilic Esophagitis in Children.Clinical gastroenterology and hepatology : the official clinical practice journal of the American Gastroenterological Association · 2022Observational
- The Economic Burden of Eosinophilic Gastritis and Eosinophilic Enteritis in the United States.Advances in therapy · 2022Article
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Authors and funding
15 authors at 7 institutions in 1 country.
Funding
Abstract
introductionEosinophilic 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.
methodsAdult 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.
resultsOf 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.
conclusionsIndividuals 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.
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.