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

Girish Hiremath, Ellyn Kodroff, Mary J. Strobel, Melissa Scott, Wendy Book, Cathy Reidy, Shay Kyle, Denise Mack, Kathleen Sable, Pablo Abonia, Jonathan Spergel, Sandeep Gupta, T. Glenn Furuta, Marc E. Rothenberg, Evan S. Dellon

Research output: Contribution to journalArticle

9 Citations (Scopus)

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.

Original languageEnglish (US)
JournalClinics and Research in Hepatology and Gastroenterology
DOIs
StateAccepted/In press - Jan 1 2018
Externally publishedYes

Fingerprint

Patient Advocacy
Caregivers
Delivery of Health Care
Insurance Coverage
Health Expenditures
Focus Groups
Endoscopy
Logistic Models
Research Personnel
Demography
Surveys and Questionnaires
Research

Keywords

  • Eosinophilic esophagitis
  • Eosinophilic gastritis
  • Eosinophilic gastroenteritis
  • Eosinophilic gastrointestinal disorders
  • Health promotion
  • Health services research
  • Healthcare barriers
  • Rare diseases
  • Survey
  • Unmet needs

ASJC Scopus subject areas

  • Gastroenterology

Cite this

Individuals affected by eosinophilic gastrointestinal disorders have complex unmet needs and frequently experience unique barriers to care. / Hiremath, Girish; Kodroff, Ellyn; Strobel, Mary J.; Scott, Melissa; Book, Wendy; Reidy, Cathy; Kyle, Shay; Mack, Denise; Sable, Kathleen; Abonia, Pablo; Spergel, Jonathan; Gupta, Sandeep; Furuta, T. Glenn; Rothenberg, Marc E.; Dellon, Evan S.

In: Clinics and Research in Hepatology and Gastroenterology, 01.01.2018.

Research output: Contribution to journalArticle

Hiremath, G, Kodroff, E, Strobel, MJ, Scott, M, Book, W, Reidy, C, Kyle, S, Mack, D, Sable, K, Abonia, P, Spergel, J, Gupta, S, Furuta, TG, Rothenberg, ME & Dellon, ES 2018, 'Individuals affected by eosinophilic gastrointestinal disorders have complex unmet needs and frequently experience unique barriers to care', Clinics and Research in Hepatology and Gastroenterology. https://doi.org/10.1016/j.clinre.2018.03.003
Hiremath, Girish ; Kodroff, Ellyn ; Strobel, Mary J. ; Scott, Melissa ; Book, Wendy ; Reidy, Cathy ; Kyle, Shay ; Mack, Denise ; Sable, Kathleen ; Abonia, Pablo ; Spergel, Jonathan ; Gupta, Sandeep ; Furuta, T. Glenn ; Rothenberg, Marc E. ; Dellon, Evan S. / Individuals affected by eosinophilic gastrointestinal disorders have complex unmet needs and frequently experience unique barriers to care. In: Clinics and Research in Hepatology and Gastroenterology. 2018.
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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.",
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AU - Hiremath, Girish

AU - Kodroff, Ellyn

AU - Strobel, Mary J.

AU - Scott, Melissa

AU - Book, Wendy

AU - Reidy, Cathy

AU - Kyle, Shay

AU - Mack, Denise

AU - Sable, Kathleen

AU - Abonia, Pablo

AU - Spergel, Jonathan

AU - Gupta, Sandeep

AU - Furuta, T. Glenn

AU - Rothenberg, Marc E.

AU - Dellon, Evan S.

PY - 2018/1/1

Y1 - 2018/1/1

N2 - 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.

AB - 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.

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KW - Eosinophilic gastritis

KW - Eosinophilic gastroenteritis

KW - Eosinophilic gastrointestinal disorders

KW - Health promotion

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KW - Healthcare barriers

KW - Rare diseases

KW - Survey

KW - Unmet needs

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