Health-Related Quality of Life, Work Productivity and Activity Impairment, and Fatigue in Patients with Idiopathic or Lymphocytic Hypereosinophilic Syndrome: A Real-World Survey

• Published in: Blood 2024-11, Vol.144 (Supplement 1), p.5075-5075
• Main Authors: Schwaab, Juliana, Dolin, Paul, Jain, Priya, Rowell, Jennifer, Edmonds, Chris, Persson, Josepine, Mascia, Daniel, Pennant, Tia, Hennessy, Fritha, Chen, Stephanie Yanjing
• Format: Article
• Language: English
• ISSN: 0006-4971; 1528-0020
• DOI: 10.1182/blood-2024-194818

Introduction: Hypereosinophilic syndrome (HES) is a group of rare diseases characterized by persistent hypereosinophilia in the blood and/or tissues, conferring significant disease burden. This real-world study described the impact of idiopathic HES (I-HES) and lymphocytic HES (L-HES) on the health-related quality of life (HRQoL), impairment to work and activity, and fatigue of patients (pt)s. Methods: Data were drawn from the Adelphi Real World HES Disease Specific Programme™, a cross-sectional survey of physicians and pts in France, Germany, Italy, Spain, the United Kingdom (UK), and the United States from July-December 2023. Physicians reported pt demographics, clinical and disease characteristics (disease severity and status were physician determined) and treatment patterns for two to four consecutively consulting pts with I-HES or L-HES whom they were managing. Pts reported HRQoL using the EQ-5D-5L (Dolan 1997 UK tariff; index score ranging from 0 [worst health] to 1 [best health]), the Work Productivity and Activity Impairment questionnaire (WPAI; 0 [no impairment] to 100 [maximum impairment]), and the Pt Reported Outcome Measurement Information System Fatigue 7a (PROMIS-Fatigue 7a; 29.4 [lowest level of fatigue] to 83.2 [highest level of fatigue]). Analyses were descriptive. Results: Overall, 117 physicians provided data on 451 pts with I-HES or L-HES with a mean (standard deviation [SD]) age of 44.7 (16.1) years, of whom 62% were male. Of pts who provided their ethnicity (n=367), 87% were White. In pts who completed EQ-5D (n=123), WPAI (n=60), and PROMIS-Fatigue 7a (n=122) questionnaires, mean (SD) ages were 38.7 (14.0), 39.1 (10.3) and 38.7 (14.2) years, respectively. Around two-thirds (≥65%) of pts who completed these questionnaires were male, and most (≥98%) were White. All outcome scores are presented as mean (SD). Overall, EQ-5D was 0.80 (0.14). In pts with severe (n=3), moderate (n=25), mild (n=65) and inactive (n=30) HES, EQ-5D were 0.54 (0.10), 0.69 (0.11), 0.80 (0.13) and 0.90 (0.10), respectively. In pts with deteriorating (n=7), stable (n=53), or improving HES (n=62), EQ-5D were 0.61 (0.09), 0.80 (0.14) and 0.82 (0.14), respectively. EQ-5D in pts with a most recent peak blood eosinophil (bEOS) count of 1000 cells/μL (n=20) were 0.81 (0.13), 0.70 (0.09) and 0.77 (0.15), respectively. In pts experiencing 0 (n=21), 1-2 (n=29), or ≥3 (n=73) symptoms at survey completion, EQ-5D were 0.92 (0.11), 0.84 (0.11) an