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Paediatric health-related quality of life: what is it and why should we measure it?
  1. L Haverman1,
  2. P F Limperg1,
  3. N L Young2,
  4. M A Grootenhuis1,3,
  5. R J Klaassen4
  1. 1Psychosocial Department G8-136, Emma Children's Hospital/Academic Medical Center, Amsterdam, The Netherlands
  2. 2School of Rural and Northern Health, Laurentian University, Sudbury, Ontario, Canada
  3. 3Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
  4. 4Division of Hematology/Oncology, University of Ottawa, Children's Hospital of Eastern Ontario, Ottawa, Ontario, Canada
  1. Correspondence to Dr RJ Klaassen, Department of Pediatrics Division of Hematology/Oncology, University of Ottawa Children's Hospital of Eastern Ontario, 401 Smyth Road, Ottawa, Ontario, Canada KIH 8L1; rklaassen{at}cheo.on.ca

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Introduction

As a paediatrician, you follow a number of children with chronic health conditions in your practice. You provide them with a variety of therapies and would like to know whether your treatments are having an impact, in particular whether there has been a change in the patient's health-related quality of life (HRQOL). HRQOL measures have the potential to augment the information that clinicians have available, to enhance their clinical decisions and assess the impact of a chronic health condition on a child's life. How should you try to capture this information?

What is health-related quality of life?

The WHO defines quality of life (QOL) as ‘a child's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns’1 and HRQOL) as ‘a child's goals, expectations, standards or concerns about their overall health and health-related domains’.1 ,2 That being said, many other definitions of HRQOL have been proposed over the years, and a variety of terms are currently used.3 ,4 Although the term QOL is sometimes used interchangeably with HRQOL, QOL is actually a broader construct that encompasses aspects of life that may not be amenable to healthcare services.5 Thus, spirituality and financial resources are, for example, often included in QOL, but are not necessarily included as part of HRQOL. In this paper, we regard QOL in children as a multidimensional subjective concept that includes social, emotional, cognitive and physical functioning as well as cultural aspects of the child and family, while HRQOL incorporates measures of physical symptoms, functional status and disease impact on psychological and social functioning.6 ,7

Children growing up with chronic health conditions (or suffered a severe acute illness and experience late effects) are at greater risk for …

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