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Measuring quality of life in children and young people after transplantation: Methodological considerations

Authors

  • Rachel M. Taylor,

    1. Department of Children’s Nursing, Faculty of Health and Social Care, London South Bank University, London, UK
    2. Cancer Institute, University College London, London, UK
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  • Jo Wray,

    1. Patient Care Research & Innovation Centre, UCL Institute of Child Health, London, UK
    2. Great Ormond Street Hospital for Children NHS Trust, London, UK
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  • Faith Gibson

    1. Department of Children’s Nursing, Faculty of Health and Social Care, London South Bank University, London, UK
    2. Great Ormond Street Hospital for Children NHS Trust, London, UK
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  • Presented at the post-graduate course of the 5th Biennial meeting of the International Pediatric Transplant Association (IPTA), Istanbul, Turkey in April 2009.

Dr. Rachel Taylor, Research Associate, Department of Children’s Nursing, Faculty of Health and Social Care, London South Bank University, 103 Borough Road, London SE1 0AA, UK
Tel.: +44 0 7967 012 909
Fax: +44 0 1784 415 985
E-mail: Rachel.taylor@lsbu.ac.uk

Abstract

Taylor RM, Wray J, Gibson F. Measuring quality of life in children and young people after transplantation: Methodological considerations.
Pediatr Transplantation 2010: 14:445–458. © 2010 John Wiley & Sons A/S.

Abstract:  The measurement of QoL has become an important area for research in paediatric transplantation over the past 15 yr. While much of this work remains descriptive and exploratory, advances in treatment and the trend towards outcomes being patient centred and not just survival based suggest the measurement of QoL will be of far more importance and relevance in the future. In this discussion article, we will outline some of the issues that need to be considered when embarking on a QoL study. The aim of our account is not to be prescriptive, rather to present researchers and clinicians with questions and possible solutions to help increase the scientific robustness of future studies. We have included summary tables of instruments that are currently available as a resource for those wanting to evaluate QoL in paediatric transplantation.

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