Girish Hiremath1, Ellyn Kodroff2, Mary J Strobel3, Melissa Scott4, Wendy Book3, Cathy Reidy4, Shay Kyle2, Denise Mack3, Kathleen Sable3, Pablo Abonia5, Jonathan Spergel6, Sandeep K Gupta7, T Glenn Furuta8, Marc E Rothenberg5, Evan S Dellon9. 1. Division of Pediatric Gastroenterology, Hepatology and Nutrition, Monroe Carell Jr Children's Hospital at Vanderbilt, DOT Suite 10226, 2200 Children's Way, Nashville, TN 37232, USA. Electronic address: Girish.Hiremath@Vanderbilt.edu. 2. Campaign Urging Research for Eosinophilic Diseases, Lincolnshire, IL, USA. 3. American Partnership for Eosinophilic Disorders, Atlanta, GA, USA. 4. Eosinophilic Family Coalition, Cincinnati, OH, USA. 5. Division of Allergy and Immunology, Cincinnati Children's Hospital and Medical Center, Cincinnati, OH, USA. 6. Division of Allergy and Immunology, Department of Pediatrics, Perelman School of Medicine at University of Pennsylvania, Philadelphia, PA, USA. 7. Division of Pediatric Gastroenterology, Hepatology and Nutrition, University of Illinois College of Medicine, Peoria, IL, USA. 8. Digestive Health Institute, Gastrointestinal Eosinophilic Diseases Program, Children's Hospital Colorado, Aurora, CO, USA. 9. Center for Esophageal Diseases and Swallowing, Division of Gastroenterology and Hepatology, University of North Carolina School of Medicine, Chapel Hill, NC, USA.
Abstract
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.
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 EGIDpatients and adult caregivers of children with EGID. METHODS: Adult EGIDpatients 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 EGIDpatients 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 EGIDpatients 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.
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