Health‐related quality of life in haemophilia patients with inhibitors and their caregivers
作者： M. DeKoven , T. Wisniewski , A. Petrilla , N. Holot , W. C. Lee
DOI: 10.1111/HAE.12019
关键词:
摘要: Summary. Data on the health-related quality of life (HRQoL) congenital haemophilia patients with inhibitors (CHwI) and their caregivers are limited. To understand association between patient demographics/clinical characteristics HRQoL among CHwI caregivers, a survey was developed to assess haemophilia-specific QoL questionnaires (HAEMO-QoL/HAEM-A-QoL). In cross-sectional study, paper-pencil were mailed 261 US patients/caregivers in July 2010. Descriptive analyses performed characterize by age identify drivers impairment, from both patient/caregiver perspectives. scores transformed scale 0–100, higher indicating impairment HRQoL. Ninety-seven respondents completed assessment. adult patients. children ages 8–16 years, mean HAEMO-QoL total score 33.8 (SD = 15.5), 35.0 16.1) 4– 7 years; for HAEM-A-QoL
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