11. Quality of Life in Hemophilia

  1. Emérito-Carlos Rodríguez-Merchán MD, PHD2,3 and
  2. Leonard A. Valentino MD4
  1. Eduardo Remor PhD

Published Online: 12 MAY 2011

DOI: 10.1002/9781119979401.ch11

Current and Future Issues in Hemophilia Care

Current and Future Issues in Hemophilia Care

How to Cite

Remor, E. (2011) Quality of Life in Hemophilia, in Current and Future Issues in Hemophilia Care (eds E.-C. Rodríguez-Merchán and L. A. Valentino), Wiley-Blackwell, Oxford, UK. doi: 10.1002/9781119979401.ch11

Editor Information

  1. 2

    Department of Orthopedic Surgery and Hemophilia Unit, La Paz University Hospital, Spain

  2. 3

    School of Medicine, Autonomous University, Madrid, Spain

  3. 4

    Hemophilia and Thrombophilia Center, Rush University Medical Center, Chicago, IL, USA

Author Information

  1. Autonomous University, Madrid, Spain

Publication History

  1. Published Online: 12 MAY 2011
  2. Published Print: 13 MAY 2011

ISBN Information

Print ISBN: 9780470670576

Online ISBN: 9781119979401

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Keywords:

  • quality of life;
  • hemophilia;
  • patient-reported outcome;
  • psychological burden;
  • A36 Hemofilia-QoL;
  • assessment

Summary

This chapter intends to update the quality of life issue in hemophilia. A short overview of the quality of life construct and its link with health and well-being will be addressed. The importance of the evaluation of the health-related quality of life (HRQoL) as a health outcome, the objectives of HRQoL research, the types of measurement and instrument characteristics, the criteria for choosing a patient-reported outcome (PRO) measure within several, the disease specific health-related quality-of-life instruments available for hemophilia, and the evidence of hemophilia clinical indicators impacting health-related quality-of-life measured by PRO will be addressed as well. Evidence described by studies assessing HRQoL damage in hemophilia patients with inhibitors will be also mentioned.