Quality of Life Research

, Volume 13, Issue 4, pp 761–772 | Cite as

Quality of life as conveyed by pediatric patients with cancer

  • P.S. Hinds
  • J.S. Gattuso
  • A. Fletcher
  • E. Baker
  • B. Coleman
  • T. Jackson
  • A. Jacobs-Levine
  • D. June
  • S.N. Rai
  • S. Lensing
  • C.-H. Pui
Article

Abstract

Quality-of-life instruments have provided important advances in measuring the quality of life of pediatric patients receiving treatment for cancer. However, the bases of these instruments have not included first-hand reports from the patients; thus, these instruments may be conceptually incomplete. We directly solicited from pediatric patients their perspectives regarding their quality of life during treatment for cancer. We conducted two pilot studies: 23 patients (aged 8–15 years) participated in the first, a cross-sectional study; and 13 patients (aged 10–18 years) participated in the second, a 2-year longitudinal study. Data were analyzed by using a semantic-content method, and the following six domains were recognized in data from both of the studies: symptoms, usual activities, social/family interactions, health status, mood, and the meaning of being ill. These domains were compared with those of seven established pediatric oncology quality-of-life instruments, none of which included all six of these domains; the domain most frequently missing was the meaning of being ill domain. Here we present a new definition of the quality of life of pediatric oncology patients that is based on six domains; this definition may ensure the completeness and sensitivity of these important instruments.

Cancer Interviews Pediatrics Quality of life 

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Copyright information

© Kluwer Academic Publishers 2004

Authors and Affiliations

  • P.S. Hinds
    • 1
  • J.S. Gattuso
    • 1
  • A. Fletcher
    • 2
  • E. Baker
    • 1
  • B. Coleman
    • 1
  • T. Jackson
    • 1
  • A. Jacobs-Levine
    • 1
  • D. June
    • 1
  • S.N. Rai
    • 3
  • S. Lensing
    • 3
  • C.-H. Pui
    • 4
    • 5
  1. 1.Patient Care ServicesSt. Jude Children's Research HospitalMemphisUSA
  2. 2.Behavioral MedicineUniversity of Tennessee Health Science CenterMemphisUSA
  3. 3.Department of BiostatisticsSt. Jude Children's Research HospitalMemphisUSA
  4. 4.Department of Hematology–OncologySt. Jude Children's Research HospitalMemphisUSA
  5. 5.Department of PediatricsUniversity of Tennessee Health Science CenterMemphisUSA

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