Individuals affected by eosinophilic gastrointestinal disorders have complex unmet needs and frequently experience unique barriers to care - 18/10/18
, Ellyn Kodroff b, 1, Mary J. Strobel c, 1, Melissa Scott d, 1, Wendy Book c, Cathy Reidy d, Shay Kyle b, Denise Mack c, Kathleen Sable c, Pablo Abonia e, Jonathan Spergel f, Sandeep K. Gupta g, T. Glenn Furuta h, Marc E. Rothenberg e, Evan S. Dellon iBenvenuto su EM|consulte, il riferimento dei professionisti della salute.
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Highlights |
• | Eosinophilic gastrointestinal disorders (EGID) are group of rare but pose significant burden worldwide. |
• | Patient advocacy groups have an important role in representing the EGID community. |
• | This is the first study to use online portal to study unmet needs and barriers experienced by individuals affected by EGIDs. |
• | Our results reveal that individuals affected by EGIDs have a constellation of complex unmet needs and perceived barriers across medical, healthcare, social and emotional domains. |
• | Understanding unmet needs and barriers will likely guide us to design EGID patient-centered approaches to improve their care and clinical outcomes. |
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 (<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.
Il testo completo di questo articolo è disponibile in PDF.Keywords : Rare diseases, Eosinophilic gastrointestinal disorders, Eosinophilic esophagitis, Eosinophilic gastritis, Eosinophilic gastroenteritis, Unmet needs, Survey, Healthcare barriers, Health services research, Health promotion
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Vol 42 - N° 5
P. 483-493 - Ottobre 2018 Ritorno al numero
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