title: Impact of acute bleeding on daily activities of patients with congenital hemophilia with inhibitors and their caregivers and families: observations from the Dosing Observational Study in Hemophilia (DOSE).
abstract: OBJECTIVE
  There is limited understanding of the effects of bleeding episodes on the daily lives of patients with congenital hemophilia with inhibitors and their caregivers. This analysis of the Dosing Observational Study in Hemophilia examined the impact of acute bleeding episodes on work, school, and family activities.
  
  
  METHODS
  Patients and caregivers participated in a diary study for 90 or more days or until patients experienced four bleeding episodes. All bleed treatments, interference with daily activities, and quality-of-life assessments were captured in daily records. Patients and caregivers reported planned workdays or school days eligible to be "lost" so as to differentiate from days lost because of disability or nonworking status, weekends, and vacations.
  
  
  RESULTS
  Diaries were completed for 39 patients (18 adults and 21 children). Bleeding episodes that continued for 3 or more days (16.4%) accounted for most of the major changes to family plans. For the 38 patients with bleeding episodes, 47% of 491 bleed days fell on planned workdays or school days; the remainder fell on weekends, holidays, or nonworkdays or non-school days and therefore did not count as "lost days." Patients reported a loss of productivity on a greater percentage of eligible bleed days than did caregivers (3.9% vs. 0.8%, respectively). Patients and caregivers reported 13.5%/9.3% fully missed and 3.5%/7.6% partially missed days.
  
  
  CONCLUSIONS
  This study demonstrated that in hemophilia with inhibitors, bleeding episodes interfere with the daily activities of patients and their caregivers. Furthermore, documenting only lost days underestimated the impact of bleeding episodes because of the high percentage of days without planned work or school.
authors.affiliation: The Hemophilia Center, Oregon Health & Science University, Portland, OR, USA. Electronic address: rechtm@ohsu.edu.
authors.forename: Michael
authors.initials: M
authors.lastname: Recht
authors.affiliation: Boston Children's Hospital, Boston, MA, USA.
authors.forename: Ellis J
authors.initials: EJ
authors.lastname: Neufeld
authors.affiliation: James Graham Brown Cancer Center, Louisville, KY, USA.
authors.forename: Vivek R
authors.initials: VR
authors.lastname: Sharma
authors.affiliation: Pharmerit North America, Bethesda, MD, USA.
authors.forename: Caitlyn T
authors.initials: CT
authors.lastname: Solem
authors.affiliation: Department of Pharmacy Systems, Outcomes and Policy, University of Illinois at Chicago, Chicago, IL, USA.
authors.forename: A Simon
authors.initials: AS
authors.lastname: Pickard
authors.affiliation: Novo Nordisk Inc., Princeton, NJ, USA.
authors.forename: Robert Z
authors.initials: RZ
authors.lastname: Gut
authors.affiliation: Novo Nordisk Inc., Princeton, NJ, USA.
authors.forename: David L
authors.initials: DL
authors.lastname: Cooper
mesh_terms: D000203:Activities of Daily Living; D000208:Acute Disease; D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000639:trends; D002648:Child; D002675:Child, Preschool; D004305:Dose-Response Relationship, Drug; D005190:Family; D055991:Health Records, Personal; D006467:Hemophilia A / Q000097:blood / Q000175:diagnosis / Q000453:epidemiology*; D006470:Hemorrhage / Q000097:blood / Q000175:diagnosis / Q000453:epidemiology*; D006801:Humans; D007223:Infant; D007518:Isoantibodies / Q000097:blood; D008297:Male; D008875:Middle Aged; D011446:Prospective Studies; D055815:Young Adult
chemical_list: D007518:Isoantibodies
keywords: DOSE; congenital hemophilia; daily activities; inhibitors; quality of life