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

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.

SUBMITTER: Hiremath G

PROVIDER: S-EPMC6167209 | biostudies-literature | 2018 Oct

REPOSITORIES: biostudies-literature

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

Hiremath Girish G Kodroff Ellyn E Strobel Mary J MJ Scott Melissa M Book Wendy W Reidy Cathy C Kyle Shay S Mack Denise D Sable Kathleen K Abonia Pablo P Spergel Jonathan J Gupta Sandeep K SK Furuta T Glenn TG Rothenberg Marc E ME Dellon Evan S ES

Clinics and research in hepatology and gastroenterology 20180331 5

<h4>Introduction</h4>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 ...[more]

PMID: 29615329

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Project description:Summary Background Assistive technology (AT) is essential to minimize functional limitations. The current study aimed to estimate the prevalence of needs, met and unmet needs for AT, and barriers to accessing AT among a subnational population in India. Methods This cross-sectional study was conducted in eight districts, representing four zones of India, using the WHO Rapid Assistive Technology Assessment (rATA) tool. The tool was administered by trained staff using read aloud technique. Multi-stage cluster random sampling was used, as well as the probability proportional to size, to select smaller administrative units from the larger ones. Findings In total, 8486 participants were surveyed out of 8964 individuals enumerated with a response rate of 94.6%. The sample prevalence of at least one difficulty was 31.8% (2700), with 6.3% (532) having severe or total difficulties. The sample prevalence for AT need was 27.8% (2357) with an estimated population prevalence of 24.5% (95% CI: 23.5–25.4). Similarly, the sample prevalence of unmet needs was 9.7% (823) with an estimated population unmet needs of 8.0% (95% CI: 7.43–8.60). The unmet needs among persons with severe or total difficulties was 52.3% (278/532), and was higher among females, rural residents, and older persons. Spectacles were the most used products, followed by canes/sticks, tripods, and quadripods. Nearly two-thirds of AT users purchased assistive products at their own expense, particularly from the private sector. The inability to afford AT (36.9%) was the most common barrier. Interpretation The results show that the need for AT was substantial in the study population, the highest being for seeing difficulties. The unmet needs are higher in females, older population, rural residents, and persons having serious difficulties. While the majority of users have to make out-of-pocket payments to obtain AT, inability to afford and limited availability were the common barriers among those with unmet needs. Funding This research is non-commercial, and was conducted in the interest of public health. The authors have not declared any specific grant for this research.

Project description:IntroductionThe National Statistical Yearbook of Defense 2018 issued by the Republic of Korea (ROK) Ministry of National Defense reported that the number of patients using military hospitals steadily increased from 2008 to 2017. However, in the outpatient clinic statistics for years 2015-2017 from the ROK Armed Forces Medical Command, the amount of medical care received from some medical departments, such as the infection medicine, surgery, and anesthesiology departments, decreased. Therefore, the purpose of this study was to observe the differences in incidence of military personnel's unmet healthcare needs according to number of diseases by type.Materials and methodsThe study used data from the Military Health Survey, which was conducted from 2014 to 2015 and included 5162 responses from ROK military personnel. The number of diseases by type and unmet healthcare needs were self-reported. A multiple logistic regression analysis was used to examine the validity of the annual disease experience by type and correlations with unmet healthcare needs.ResultsOf the 5162 military personnel, 25.2% experienced unmet healthcare needs, and the more people with the number of disease by type, the more likely they were to experience unmet healthcare needs (1: 13.4%, 2: 22.9%, 3: 29.2%, 4: 34.5%, 5: 41.4%). The logistic regression analysis also revealed significant differences (1 = REF, 2 odds ratio (OR) = 1.83, 95% confidence interval (CI): 1.50-2.24; 3 OR = 2.53, 95% CI: 2.05-3.11, 4 OR = 3.10, 95% CI = 2.49-3.85; ≥5 OR = 3.85, 95% CI = 3.08-4.81). In addition, subgroup analysis showed that female military personnel are more likely to experience unmet healthcare needs than are male military personnel. We have also confirmed that working areas and private insurance can affect unmet healthcare needs.ConclusionThis study suggests that unmet healthcare needs are influenced by the number of disease by the type of ROK military personnel. It is therefore necessary to strive to reduce the number of military personnel who experience unmet healthcare needs through this data.

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

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

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