Burden of hypereosinophilic syndromes in the United States: Patients’ perspective
Background: Hypereosinophilic syndromes (HES) are rare hematologic disorders characterized by hypereosinophilia and eosinophil-driven organ damage/dysfunction. The HES diagnostic and treatment journey is poorly understood. Objective: We sought to describe the experience and disease burden of HES fro...
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| Format: | Article |
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Elsevier
2025-08-01
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| Series: | Journal of Allergy and Clinical Immunology: Global |
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S277282932500102X |
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| author | Jared Silver, MD, PhD Anna Kovalszki, MD Mary Jo Strobel Dan Gratie, PharmD, MS Amy G. Edgecomb, PharmD, MPH Cara Schmitt, MS Waseem Ahmed, BSc, MBA Arijita Deb, PhD |
| author_facet | Jared Silver, MD, PhD Anna Kovalszki, MD Mary Jo Strobel Dan Gratie, PharmD, MS Amy G. Edgecomb, PharmD, MPH Cara Schmitt, MS Waseem Ahmed, BSc, MBA Arijita Deb, PhD |
| author_sort | Jared Silver, MD, PhD |
| collection | DOAJ |
| description | Background: Hypereosinophilic syndromes (HES) are rare hematologic disorders characterized by hypereosinophilia and eosinophil-driven organ damage/dysfunction. The HES diagnostic and treatment journey is poorly understood. Objective: We sought to describe the experience and disease burden of HES from a patient perspective. Methods: An online cross-sectional survey was completed by US patients aged 18 years and older with self-reported HES or caregivers (recruited via the American Partnership for Eosinophilic Disorders). Data on symptoms, diagnosis process, treatment, health care resource utilization, quality of life, and support structure were collected. Results: The mean age of the respondents (HES, n = 53; caregiver, n = 1) was 43.6 years (80% White and 57% male). One-quarter (26%) received their HES diagnosis in less than 3 months from first symptoms; 30% waited 3 months to 1 year, 37% 1 to 5 years, and 7% more than 5 years. Almost half of the respondents (n = 26) required hospital care 1 to 3 times in the 12 months before diagnosis. Most common symptoms were fatigue (96%), general discomfort (85%), wheezing (80%), rash (78%), and dry cough (76%). The most burdensome symptoms included leg swelling (100%), sweating (78%), and shortness of breath (64%). Symptoms associated with HES end-organ damage (respiratory and hypercoagulability symptoms) were observed. HES substantially impacted quality of life including work quality/productivity, finances, and relationships. Patients additionally wished for their doctor to show more empathy for their symptom burden, pain, and long-term mental health impacts. Conclusions: People with HES face long diagnostic journeys. The findings in this study highlight the heterogeneous symptoms, challenges, and multifactorial burden they experience, providing a voice for patients with HES and enhancing physician awareness to support improved diagnostics and management. |
| format | Article |
| id | doaj-art-0909a2565feb4d119551804b324ff0e4 |
| institution | DOAJ |
| issn | 2772-8293 |
| language | English |
| publishDate | 2025-08-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Journal of Allergy and Clinical Immunology: Global |
| spelling | doaj-art-0909a2565feb4d119551804b324ff0e42025-08-20T03:18:38ZengElsevierJournal of Allergy and Clinical Immunology: Global2772-82932025-08-014310050110.1016/j.jacig.2025.100501Burden of hypereosinophilic syndromes in the United States: Patients’ perspectiveJared Silver, MD, PhD0Anna Kovalszki, MD1Mary Jo Strobel2Dan Gratie, PharmD, MS3Amy G. Edgecomb, PharmD, MPH4Cara Schmitt, MS5Waseem Ahmed, BSc, MBA6Arijita Deb, PhD7US Medical Affairs—Respiratory, GSK, Durham, NCUniversity of Michigan, Ann Arbor, MichAmerican Partnership for Eosinophilic Disorders (APFED), Atlanta, GaAESARA, Chapel Hill, NCAnti-Infectives and Respiratory, US Real-World Evidence and Health Outcomes Research, GSK, Collegeville, PaAmerican Partnership for Eosinophilic Disorders (APFED), Atlanta, GaGlobal Data Generation, GSK, London, United KingdomGlobal Real-World Evidence & Health Outcomes Research, GSK, Upper Providence, Pa; Corresponding author: Arijita Deb, PhD, US Value Evidence and Outcomes, GSK, 1250 S Collegeville Rd, Collegeville, PA 19426.Background: Hypereosinophilic syndromes (HES) are rare hematologic disorders characterized by hypereosinophilia and eosinophil-driven organ damage/dysfunction. The HES diagnostic and treatment journey is poorly understood. Objective: We sought to describe the experience and disease burden of HES from a patient perspective. Methods: An online cross-sectional survey was completed by US patients aged 18 years and older with self-reported HES or caregivers (recruited via the American Partnership for Eosinophilic Disorders). Data on symptoms, diagnosis process, treatment, health care resource utilization, quality of life, and support structure were collected. Results: The mean age of the respondents (HES, n = 53; caregiver, n = 1) was 43.6 years (80% White and 57% male). One-quarter (26%) received their HES diagnosis in less than 3 months from first symptoms; 30% waited 3 months to 1 year, 37% 1 to 5 years, and 7% more than 5 years. Almost half of the respondents (n = 26) required hospital care 1 to 3 times in the 12 months before diagnosis. Most common symptoms were fatigue (96%), general discomfort (85%), wheezing (80%), rash (78%), and dry cough (76%). The most burdensome symptoms included leg swelling (100%), sweating (78%), and shortness of breath (64%). Symptoms associated with HES end-organ damage (respiratory and hypercoagulability symptoms) were observed. HES substantially impacted quality of life including work quality/productivity, finances, and relationships. Patients additionally wished for their doctor to show more empathy for their symptom burden, pain, and long-term mental health impacts. Conclusions: People with HES face long diagnostic journeys. The findings in this study highlight the heterogeneous symptoms, challenges, and multifactorial burden they experience, providing a voice for patients with HES and enhancing physician awareness to support improved diagnostics and management.http://www.sciencedirect.com/science/article/pii/S277282932500102XAmerican Partnership for Eosinophilic Disorderscross-sectional surveyhealth care resource utilizationhypereosinophilic syndromespatient experiencequality of life |
| spellingShingle | Jared Silver, MD, PhD Anna Kovalszki, MD Mary Jo Strobel Dan Gratie, PharmD, MS Amy G. Edgecomb, PharmD, MPH Cara Schmitt, MS Waseem Ahmed, BSc, MBA Arijita Deb, PhD Burden of hypereosinophilic syndromes in the United States: Patients’ perspective Journal of Allergy and Clinical Immunology: Global American Partnership for Eosinophilic Disorders cross-sectional survey health care resource utilization hypereosinophilic syndromes patient experience quality of life |
| title | Burden of hypereosinophilic syndromes in the United States: Patients’ perspective |
| title_full | Burden of hypereosinophilic syndromes in the United States: Patients’ perspective |
| title_fullStr | Burden of hypereosinophilic syndromes in the United States: Patients’ perspective |
| title_full_unstemmed | Burden of hypereosinophilic syndromes in the United States: Patients’ perspective |
| title_short | Burden of hypereosinophilic syndromes in the United States: Patients’ perspective |
| title_sort | burden of hypereosinophilic syndromes in the united states patients perspective |
| topic | American Partnership for Eosinophilic Disorders cross-sectional survey health care resource utilization hypereosinophilic syndromes patient experience quality of life |
| url | http://www.sciencedirect.com/science/article/pii/S277282932500102X |
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