Health-Related Quality of Life and Perceived Stigma in Eosinophilic Esophagitis: A Real-World, US, Web-Based Survey
Background and Aims: Eosinophilic esophagitis (EoE) is associated with impaired health-related quality of life (HRQoL) and stigma perceptions. Therefore, we examined the real-world impact of EoE on the daily life and ability to function in adolescents (caregiver-reported) and adults with EoE in the...
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| Format: | Article |
| Language: | English |
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Elsevier
2024-01-01
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| Series: | Gastro Hep Advances |
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S2772572324001109 |
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| author | Benjamin D. Gold Bridgett Goodwin Kimberly Davis Carolyn Sweeney Maria Reynolds Jeanne Jiang Tao Fan Mena Boules Szu-Ta Chen David A. Katzka |
| author_facet | Benjamin D. Gold Bridgett Goodwin Kimberly Davis Carolyn Sweeney Maria Reynolds Jeanne Jiang Tao Fan Mena Boules Szu-Ta Chen David A. Katzka |
| author_sort | Benjamin D. Gold |
| collection | DOAJ |
| description | Background and Aims: Eosinophilic esophagitis (EoE) is associated with impaired health-related quality of life (HRQoL) and stigma perceptions. Therefore, we examined the real-world impact of EoE on the daily life and ability to function in adolescents (caregiver-reported) and adults with EoE in the United States of America in a noninterventional, cross-sectional, web-based survey. Methods: HRQoL was assessed using the Short Form Health Survey (domains: vitality and social functioning) and the European Health Interview Survey (domain: sleep). Scores for the survey responses were on a scale of 0 to 100; higher scores indicated better performance in the HRQoL domain. Anxiety and depression were assessed using the Patient-Reported Outcomes Measurement Information System (PROMIS) short forms. Higher PROMIS scores indicated higher levels of anxiety and depression; a mean score of 50.0 was representative of the general population (individuals without EoE). The sources and impact of EoE-associated perceived stigma were also examined. Results: Overall, 211 caregivers and 184 adults completed the survey. HRQoL scores were slightly higher for adolescents than adults with EoE (adolescent and adult scores, respectively: vitality, 50.3 and 36.1; social functioning, 64.0 and 62.4; and sleep, 55.7 and 52.0). Anxiety scores (adolescent and adult scores, respectively: 54.8 and 59.7) and depression scores (54.5 and 56.3) were higher in those with EoE than in the general population. Most participants reported experiencing perceived stigma, which was most commonly from family, friends, classmates, or health-care professionals. Conclusion: Patients with EoE had poor HRQoL, which was demonstrated by the high EoE-associated emotional and psychological burdens and perceived stigma they experience. |
| format | Article |
| id | doaj-art-4e3322444ce3461ba575b9a8c7b43705 |
| institution | OA Journals |
| issn | 2772-5723 |
| language | English |
| publishDate | 2024-01-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Gastro Hep Advances |
| spelling | doaj-art-4e3322444ce3461ba575b9a8c7b437052025-08-20T02:07:01ZengElsevierGastro Hep Advances2772-57232024-01-01381087109710.1016/j.gastha.2024.07.015Health-Related Quality of Life and Perceived Stigma in Eosinophilic Esophagitis: A Real-World, US, Web-Based SurveyBenjamin D. Gold0Bridgett Goodwin1Kimberly Davis2Carolyn Sweeney3Maria Reynolds4Jeanne Jiang5Tao Fan6Mena Boules7Szu-Ta Chen8David A. Katzka9GI Care for Kids, Children’s Center for Digestive Healthcare, LLC, Atlanta, Georgia; Correspondence: Address correspondence to: Benjamin D. Gold, MD, GI Care for Kids, LLC, 993-D Johnson Ferry Road, NE Suite 440, Atlanta, GA 30342.Takeda Development Center Americas, Inc, Cambridge, MassachusettsRTI Health Solutions, Research Triangle Park, North CarolinaRTI Health Solutions, Research Triangle Park, North CarolinaRTI Health Solutions, Research Triangle Park, North CarolinaTakeda Pharmaceuticals USA, Inc, Lexington, MassachusettsTakeda Pharmaceuticals USA, Inc, Lexington, MassachusettsTakeda Pharmaceuticals USA, Inc, Lexington, MassachusettsTakeda Development Center Americas, Inc, Cambridge, MassachusettsDivision of Digestive and Liver Diseases, New York-Presbyterian/Columbia University Irving Medical Center, New York City, New YorkBackground and Aims: Eosinophilic esophagitis (EoE) is associated with impaired health-related quality of life (HRQoL) and stigma perceptions. Therefore, we examined the real-world impact of EoE on the daily life and ability to function in adolescents (caregiver-reported) and adults with EoE in the United States of America in a noninterventional, cross-sectional, web-based survey. Methods: HRQoL was assessed using the Short Form Health Survey (domains: vitality and social functioning) and the European Health Interview Survey (domain: sleep). Scores for the survey responses were on a scale of 0 to 100; higher scores indicated better performance in the HRQoL domain. Anxiety and depression were assessed using the Patient-Reported Outcomes Measurement Information System (PROMIS) short forms. Higher PROMIS scores indicated higher levels of anxiety and depression; a mean score of 50.0 was representative of the general population (individuals without EoE). The sources and impact of EoE-associated perceived stigma were also examined. Results: Overall, 211 caregivers and 184 adults completed the survey. HRQoL scores were slightly higher for adolescents than adults with EoE (adolescent and adult scores, respectively: vitality, 50.3 and 36.1; social functioning, 64.0 and 62.4; and sleep, 55.7 and 52.0). Anxiety scores (adolescent and adult scores, respectively: 54.8 and 59.7) and depression scores (54.5 and 56.3) were higher in those with EoE than in the general population. Most participants reported experiencing perceived stigma, which was most commonly from family, friends, classmates, or health-care professionals. Conclusion: Patients with EoE had poor HRQoL, which was demonstrated by the high EoE-associated emotional and psychological burdens and perceived stigma they experience.http://www.sciencedirect.com/science/article/pii/S2772572324001109Eosinophilic EsophagitisHealth-Related Quality of LifeAnxietyDepressionPerceived Stigma |
| spellingShingle | Benjamin D. Gold Bridgett Goodwin Kimberly Davis Carolyn Sweeney Maria Reynolds Jeanne Jiang Tao Fan Mena Boules Szu-Ta Chen David A. Katzka Health-Related Quality of Life and Perceived Stigma in Eosinophilic Esophagitis: A Real-World, US, Web-Based Survey Gastro Hep Advances Eosinophilic Esophagitis Health-Related Quality of Life Anxiety Depression Perceived Stigma |
| title | Health-Related Quality of Life and Perceived Stigma in Eosinophilic Esophagitis: A Real-World, US, Web-Based Survey |
| title_full | Health-Related Quality of Life and Perceived Stigma in Eosinophilic Esophagitis: A Real-World, US, Web-Based Survey |
| title_fullStr | Health-Related Quality of Life and Perceived Stigma in Eosinophilic Esophagitis: A Real-World, US, Web-Based Survey |
| title_full_unstemmed | Health-Related Quality of Life and Perceived Stigma in Eosinophilic Esophagitis: A Real-World, US, Web-Based Survey |
| title_short | Health-Related Quality of Life and Perceived Stigma in Eosinophilic Esophagitis: A Real-World, US, Web-Based Survey |
| title_sort | health related quality of life and perceived stigma in eosinophilic esophagitis a real world us web based survey |
| topic | Eosinophilic Esophagitis Health-Related Quality of Life Anxiety Depression Perceived Stigma |
| url | http://www.sciencedirect.com/science/article/pii/S2772572324001109 |
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