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)

Michael Recht, Ellis J. Neufeld, Vivek R. Sharma, Caitlyn T. Solem, A. Simon Pickard, Robert Z. Gut, David L. Cooper

Research output: Contribution to journalArticle

7 Citations (Scopus)

Abstract

Objectives: 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.

Original languageEnglish (US)
Pages (from-to)744-748
Number of pages5
JournalValue in Health
Volume17
Issue number6
DOIs
StatePublished - Sep 1 2014

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Hemophilia A
Caregivers
Observational Studies
Hemorrhage
Holidays
Quality of Life

Keywords

  • congenital hemophilia
  • daily activities
  • DOSE
  • inhibitors
  • quality of life

ASJC Scopus subject areas

  • Health Policy
  • Public Health, Environmental and Occupational Health
  • Medicine(all)

Cite this

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). / Recht, Michael; Neufeld, Ellis J.; Sharma, Vivek R.; Solem, Caitlyn T.; Pickard, A. Simon; Gut, Robert Z.; Cooper, David L.

In: Value in Health, Vol. 17, No. 6, 01.09.2014, p. 744-748.

Research output: Contribution to journalArticle

Recht, Michael ; Neufeld, Ellis J. ; Sharma, Vivek R. ; Solem, Caitlyn T. ; Pickard, A. Simon ; Gut, Robert Z. ; Cooper, David L. / 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). In: Value in Health. 2014 ; Vol. 17, No. 6. pp. 744-748.
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