Progress in Quality of Life in Children and Adolescents With Cancer

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Objectives

To describe the notable progress in conceptualizing, defining, and measuring quality of life (QOL) in children and adolescents with cancer during the past two decades.

Data Sources

Published articles.

Conclusion

QOL in children and adolescents with cancer has been defined and conceptual frameworks developed; multiple generic and cancer-specific instruments have been validated for use in this patient population. Advances include a shift to patient reports as the preferred source of QOL ratings, and use of multiple data collection points in the same study to better document the trajectory of QOL in children and adolescents with cancer.

Implications for Nursing Practice

This progress makes possible the study of interventions designed to improve the QOL of these young patients during and following treatment.

Section snippets

Defining QOL in Children and Adolescents With Cancer

A lack of conceptual clarity of QOL was identified as a troubling issue two decades ago. The dominant thought was that QOL in children and adolescents could not be defined because it was too amorphous and could instead only be described.1 A continuing problem is that the majority of studies in pediatric oncology do not identify the conceptual definition of QOL that was used to inform the study; instead only the instrument being used to measure QOL is specified. Part of the legacy of this

Conceptualization of QOL in Pediatric Oncology

Two decades ago, a conceptual model was proposed for use in research about QOL in pediatric oncology. The simplistic structure depicted three categories of influencing factors: 1) internal environment, the child's level of functioning and self-view; 2) immediate environment, how the child related to significant others such as family members or clinicians; and 3) institutional environment, factors related to the greater society and social systems and how these interact with the child's illness

QOL Instruments

The lingering challenges regarding conceptual clarity carry over into measurement of QOL for children and adolescents with cancer. A review of 11 of the more commonly used instruments to assess QOL in pediatric oncology patients indicates a wide variety of number and type of domains included within each instrument (Table 1).16, 18, 19, 20, 21, 22, 23, 24, 25, 26 The number of domains varies from 4 to 14, and number of items from 1 to 87. The most commonly measured domains include physical,

Patient Versus Parent Evaluation of QOL

Twenty years ago instruments measuring the pediatric cancer patient's QOL were administered to the child's parent to act as the child's proxy. Reasons for this practice included doubting that the child had the necessary cognitive skills to understand and report about his QOL, and wanting to avoid burdening the child with the questionnaire. Recently, the standard has shifted so that the preferred reporting source is now the pediatric oncology patient. Self-reported QOL estimates include those

Data Collection Time Points

The number of data points needed to document and understand a child's QOL is not known. The actual number needed will vary based on purpose for the measurement, if a pattern of scores for the child or patient group is established, and if normative scores are available. The majority of pediatric oncology QOL studies have a single data collection point,12, 16, 49 although longitudinal designs are increasingly being reported. Most of the longitudinal designs include two data points22 that vary in

Comparisons of QOL Scores

Other descriptive findings of pediatric oncology patients' QOL include consistently documented lower scores during treatment as compared with previously published data from healthy children.50 Children and adolescents who have more intense treatment (such as radiation) report a lower QOL compared with children who receive only chemotherapy.34, 51, 52 Children with leukemia tend to report very poor QOL the first several weeks to months of treatment, but improved QOL is reported a year after

Interventions

Although only a limited number of interventions have been reported, the variety of the interventions is large, ranging from educational, physical activity, technology-based, and tailored coping (Table 3). The interventions have tended to be for adolescents and young adults and are divided into those for patients in treatment and for survivors. Several of the interventions were designed to have one or more clinicians interact with the participants during the actual intervention.5, 7, 8, 9 One

Conclusion

The term and meaning of QOL for children and adolescents is now embedded in the day-to-day care of these patients, during and following their treatment of cancer. Efforts to define, conceptualize, and measure QOL of children and adolescents have advanced significantly during the past two decades, and a new research option may soon be available to further these advances in the form of the PROMIS QOL instrumentation. More focus on QOL at end of life and more family-centered QOL interventions are

Pamela S. Hinds, PhD, RN, FAAN: Director, Department of Nursing Research, Children's National Medical Center; Professor of Pediatrics, George Washington University, Washington, DC.

References (53)

  • B. Stevens et al.

    Adventure therapy for adolescents with cancer

    Pediatr Blood Cancer

    (2004)
  • M. Bensink et al.

    Investigating the cost-effectiveness of videotelephone based support for newly diagnosed paediatric oncology patients and their families: design of a randomised controlled trial

    BMC Health Serv Res

    (2007)
  • M. Bensink et al.

    A pilot study of videotelephone-based support for newly diagnosed paediatric oncology patients and their families

    J Telemedicine Telecare

    (2008)
  • P. Hinds et al.

    End-of-life care preferences of pediatric patients with cancer

    J Clin Oncol

    (2005)
  • P. Hinds et al.

    End of life decision-making in pediatric oncology

  • P.S. Hinds et al.

    Quality of life as conveyed by pediatric patients with cancer

    J Qual Life Res

    (2004)
  • C. Eiser et al.

    Development of a measure to assess the perceived illness experience after treatment for cancer

    Arch Dis Child

    (1995)
  • T. Hechler et al.

    Parents' perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer

    Klin Pediatr

    (2008)
  • K.A. Meeske et al.

    Factors associated with health-related quality of life in pediatric cancer survivors

    Pediatr Blood Cancer

    (2007)
  • Varni JW, Limbers CA, Burwinkle TM. How young can children reliably and validly self-report their health-related...
  • Erhart M, Ellert U, Kurth BM, et al. Measuring adolescents' HRQOL via self-reports and parent proxy versions of the...
  • M.D. Tabone et al.

    Quality of life of patients treated during childhood for a bone tumor: assessment by the Child Health Questionnaire

    Pediatr Blood Cancer

    (2005)
  • L. Sung et al.

    Construct validation of the Health Utilities Index and the Child Health Questionnaire in children undergoing cancer chemotherapy

    Br J Cancer

    (2003)
  • C. Eiser et al.

    Validity of the Rotterdam Symptom Checklist in paediatric oncology

    Med Pediatr Oncol

    (1997)
  • Landolt MA, Vollrath M, Niggli FK, et al. Health-related quality of life in children with newly diagnosed cancer:...
  • E. Wu et al.

    Assessment of health-related quality of life of adolescent cancer patients using the Minneapolis-Manchester Quality of Life Adolescent Questionnaire

    Pediatr Blood Cancer

    (2007)

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    Pamela S. Hinds, PhD, RN, FAAN: Director, Department of Nursing Research, Children's National Medical Center; Professor of Pediatrics, George Washington University, Washington, DC.

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