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Impact of hemophilia B on quality of life in affected men, women, and caregivers—Assessment of patient‐reported outcomes in the B‐ HERO ‐S study
Author(s) -
Buckner Tyler W.,
Witkop Michelle,
Guelcher Christine,
Sidonio Robert,
Kessler Craig M.,
Clark David B.,
Owens Wendy,
Frick Neil,
Iyer Neeraj N.,
Cooper David L.
Publication year - 2018
Publication title -
european journal of haematology
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 0.904
H-Index - 84
eISSN - 1600-0609
pISSN - 0902-4441
DOI - 10.1111/ejh.13055
Subject(s) - medicine , depression (economics) , quality of life (healthcare) , anxiety , population , pediatrics , physical therapy , psychiatry , nursing , environmental health , economics , macroeconomics
Health‐related quality of life ( HRQ oL) is impaired in patients with hemophilia; however, the impact in mild/moderate hemophilia B and affected women is not well characterized. Objective To evaluate factors that affect HRQ oL in adults with hemophilia B and caregivers of affected children. Methods US adult patients and caregivers of affected children completed distinct ~1‐hour online surveys including patient‐reported outcome instruments. Results In total, 299 adult patients and 150 caregivers participated. Adults with moderate hemophilia reported poorer health status (median EQ ‐5D‐5L index score, 0.63) than those with mild (0.73) or severe (0.74) hemophilia. Women reported greater pain severity than men on the Brief Pain Inventory v2 Short Form (median, 7.00 vs 5.00). Based on the Patient Health Questionnaire, mild or worse depression was observed in >50% of adult respondents, and depression was reported more often in those with moderate and severe hemophilia vs those with mild hemophilia. Most caregivers reported at least mild depression. Conclusion Pain, functional impairment, and depression/anxiety are present at higher‐than‐expected levels in individuals with hemophilia B. The large proportion of individuals with mild/moderate hemophilia and women with reduced health status suggests significant unmet needs in this population.