Individuals affected by eosinophilic gastrointestinal disorders have complex unmet needs and frequently experience unique barriers to care
| Autor: | Denise Mack, Melissa Scott, T. Glenn Furuta, Marc E. Rothenberg, Sandeep K. Gupta, Girish Hiremath, Kathleen Sable, Evan S. Dellon, Ellyn Kodroff, Shay Kyle, Cathy Reidy, Jonathan M. Spergel, Mary Jo Strobel, Pablo Abonia, Wendy Book |
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| Rok vydání: | 2018 |
| Předmět: |
medicine.medical_specialty
Hepatology business.industry Gastroenterology Health services research Logistic regression Patient advocacy Unmet needs 03 medical and health sciences 0302 clinical medicine Health promotion Family medicine Eosinophilic Health care Social domain medicine 030211 gastroenterology & hepatology 030212 general & internal medicine business |
| Zdroj: | Clinics and Research in Hepatology and Gastroenterology. 42:483-493 |
| ISSN: | 2210-7401 |
| DOI: | 10.1016/j.clinre.2018.03.003 |
| Popis: | Summary 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 ( 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. |
| Databáze: | OpenAIRE |
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