Skip to main content
SpringerLink
Log in

Quality of life as conveyed by pediatric patients with cancer

  • Published:
Quality of Life Research Aims and scope Submit manuscript

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.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

References

  1. Eiser C, Cotter I, Oades P, Seamark D, Smith R. Healthrelated quality-of-life measures for children. Int J Cancer Suppl 1999; 12: 87-90.

    Google Scholar 

  2. Juniper EF, Guyatt GH, Feeny DH, Ferrie PJ, Griffith LE, Townsand M. Measuring quality of life in the parents of children with asthma. Qual Life Res 1996; 5: 27-34.

    Google Scholar 

  3. Rosenbaum P, Cadman D, Kerpalani H. Pediatrics: Assessing quality of life. In: Spilker B (ed.), Quality of Life Assessments in Clinical Trials, New York: Raven Press, 1990; 205-215.

    Google Scholar 

  4. Eiser C, Morse R. Quality-of-life measures in chronic diseases of childhood. Health Technol Assess 2001; 5: 1-157.

    Google Scholar 

  5. Schipper H, Clinch J, Powell V. Definitions and conceptual issues. In: Spilker B (ed.), Quality of Life Assessment in Clinical Trials, New York: Raven Press, 1990; 11-24.

    Google Scholar 

  6. Parsons SK, Brown AP. Evaluation of quality of life of childhood cancer survivors: A methodological conundrum. Med Pediatr Oncol (Suppl) 1998; 1: 46-53.

    Google Scholar 

  7. Testa MA, Lenderking WR. Quality of life considerations in AIDS clinical trials. In: Finkelstein DM, Schoenfeld DA (eds), AIDS Clinical Trials, New York: Wiley-Liss, 1995; 150-159.

    Google Scholar 

  8. Bradlyn AS, Harris CV, Warner JE, Ritchey AK, Zaboy K. An investigation of the validity of the quality of well-being scale with pediatric oncology patients. Health Psychol 1993; 12: 246-250.

    Google Scholar 

  9. Barr RD, Chalmers D, De Pauw S, Furlong W, Weitzman S, Feeny D. Health-related quality of life in survivors of Wilms' tumor and advanced neuroblastoma: A cross-sectional study. Clin Oncol 2000; 18: 3280-3287.

    Google Scholar 

  10. Eiser C, Kopel S, Cool P, Grimer R. The perceived illness experience scale (PIE): Reliability and validity revisited. Child Care Health Dev 1999; 25: 179-190.

    Google Scholar 

  11. Feeny D, Furlong W, Boyle M, Torrance GW. Multi-attribute health status classification systems: Health utilities index. Pharmacoeconomics 1995; 7: 490-502.

    Google Scholar 

  12. Feeny D, Furlong W, Mulhern RK, Barr RD, Hudson M. A framework for assessing health-related quality of life among children with cancer. Int J Cancer Suppl 1999; 12: 2-9.

    Google Scholar 

  13. Graham P, Stevenson J, Flynn D. A new measure of healthrelated quality of life for children: Preliminary findings. Psychol Health 1997; 12: 655-665.

    Google Scholar 

  14. Keith K, Schalock R. The measurement of quality of life in adolescence: The quality of student life questionnaire. Am J Family Therap 1994; 22: 83-87.

    Google Scholar 

  15. Parsons SK, Barlow SE, Levy SL, Supran SE, Kaplan SH. Health-related quality of life in pediatric bone marrow transplant survivors: According to whom? Int J Cancer Suppl 1999; 12: 46-51.

    Google Scholar 

  16. Phipps S, Hinds PS, Channell S, Bell GL. Measurement of behavioral, affective, and somatic responses to pediatric bone marrow transplantation: Development of the BASES scale. J Pediatr Oncol Nurs 1994; 11: 109-117.

    Google Scholar 

  17. Seid M, Varni JW, Rode CA, Katz ER. The pediatric cancer quality of life inventory: A modular approach to measuring health-related quality of life in children with cancer. Int J Cancer Suppl 1999; 12: 71-76.

    Google Scholar 

  18. Varni JW, Katz E, Colegrove R, Dolgin M. Adjustment of children with newly diagnosed cancer: Cross-informant variance. J Psychosoc Oncol 1995; 13: 23-38.

    Google Scholar 

  19. Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A, Castro CM. The pediatric cancer quality of life inventory (PCQL): I. Instrument development, descriptive statistics, and cross-informant variance. J Behav Med 1998; 21: 179-204.

    Google Scholar 

  20. Varni JW, Katz ER, Seid M, Quiggins DJL, Friedman-Bender A. The pediatric cancer quality of life inventory-32 (PCQL-32): I. Reliability and validity. Cancer 1998; 82: 1184-1196.

    Google Scholar 

  21. Varni JW, Seid M, Rode CA. The PedsQL: Measurement model for the pediatric quality of life inventory. Med Care 1999; 37: 126-139.

    Google Scholar 

  22. Guyatt GH. Measuring health-related quality of life in childhood cancer: Lessons from the workshop (discussion). Int J Cancer Suppl 1999; 12: 143-146.

    Google Scholar 

  23. Seidel J. The Ethnograph v5.0: A User's Guide. Thousand Oaks, CA: Scolari, Sage Publications Software, Inc, 1999.

    Google Scholar 

  24. Krippendorf K. Content Analysis: An Introduction to its Methodology. Beverly Hills, CA: SAGE, 1980.

    Google Scholar 

  25. Phipps S, Dunavant M, Jayawardene D, Srivastava DK. Assessment of health related quality of life in acute in-patient settings: Use of the BASES instrument in children undergoing bone marrow transplantation. Int J Cancer Suppl 1999; 12: 18-24.

    Google Scholar 

  26. Cadman D, Goldsmith C, Torrance GW, Boyle BH, Furlong W. Development of a Health Status Index for Ontario Children. Final report to the Ontario Ministry of Health on research grant DM 648 (00633). Hamilton, Ontario: McMaster University, 1986.

    Google Scholar 

  27. Czyzewski DI, Mariotto MJ, Bartholomew LK, LeCompte SH, Sockrider MM. Measurement of quality of well being in a child and adolescent cystic fibrosis population. Med Care 1994; 32: 965-972.

    Google Scholar 

  28. Daaleman TP, VandeCreek L. Placing religion and spirituality in end-of-life care. JAMA 2000; 284: 2514-2517.

    Google Scholar 

  29. Hinds PS. Quality of life in children and adolescents with cancer. Semin Oncol Nurs 1990; 6: 285-291.

    Google Scholar 

  30. Vivier PM, Bernier JA, Starfield B. Current approaches to measuring health outcomes in pediatric research. Curr Opin Pediatr 1994; 6: 530-537.

    Google Scholar 

  31. Haase JE, Heiney SP, Ruccione KS, Stutzer C. Research triangulation to derive meaning-based quality-of-life theory: Adolescent resilience model and instrument development. Int J Cancer Suppl 1999; 12: 125-131.

    Google Scholar 

  32. Hinds P, Haase J. Quality of life in children and adolescents with cancer. In: King C, Hinds P (eds), Quality of Life: From Nursing and Patient Perspectives. Sudbury, MA: Jones and Bartlett Publishers, 1998; 93-114.

    Google Scholar 

  33. Byock IR, Merriman MP. Measuring the quality of life for patients with terminal illness: The Missoula-VITAS quality of life index. Palliat Med 1998; 12: 231-244.

    Google Scholar 

  34. Cohen SR, Mount BM, Bruera E, Provost M, Rowe J, Tong K. Validity of the McGill Quality of Life Questionnaire in the palliative care setting: A multi-centre Canadian study demonstrating the importance of the existential domain. Palliat Med 1998; 11: 3-20.

    Google Scholar 

  35. Richards MA, Ramirez AJ. Quality of life: The main outcome measure of palliative care. Palliat Med 1997; 11: 89-92.

    Google Scholar 

  36. Sterkenburg CA, King B, Woodward CA. A reliability and validity study of the McMaster quality of life scale (MQLS) for a palliative population. J Palliat Care 1999; 12: 18-25.

    Google Scholar 

  37. Stewart AL, Teno J, Patrick DL, Lynn J. The concept of quality of life of dying persons in the context of health care. J Pain Symptom Manage 1999; 17: 93-108.

    Google Scholar 

  38. Teno JM. Putting patient and family voice back into measuring quality of care for the dying. Hospice J 1999; 14: 167-176.

    Google Scholar 

  39. Teno JM, Byock I, Field MJ. Research agenda for developing measures to examine quality of care and quality of life of patients diagnosed with life-limiting illness. J Pain Symptom Manage 1999; 17: 75-82.

    Google Scholar 

  40. Lindstrom B, Kohler L. Youth, disability and quality of life. Pediatrician 1991; 18: 121-128.

    Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Patient Care Services, St. Jude Children's Research Hospital, Memphis, Tennessee, USA

    P.S. Hinds, J.S. Gattuso, E. Baker, B. Coleman, T. Jackson, A. Jacobs-Levine & D. June

  2. Behavioral Medicine, University of Tennessee Health Science Center, Memphis, Tennessee, USA

    A. Fletcher

  3. Department of Biostatistics, St. Jude Children's Research Hospital, Memphis, Tennessee, USA

    S.N. Rai & S. Lensing

  4. Department of Hematology–Oncology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA

    C.-H. Pui

  5. Department of Pediatrics, University of Tennessee Health Science Center, Memphis, Tennessee, USA

    C.-H. Pui

Authors
  1. P.S. Hinds
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. J.S. Gattuso
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. A. Fletcher
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. E. Baker
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. B. Coleman
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. T. Jackson
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. A. Jacobs-Levine
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. D. June
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. S.N. Rai
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. S. Lensing
    View author publications

    You can also search for this author in PubMed Google Scholar

  11. C.-H. Pui
    View author publications

    You can also search for this author in PubMed Google Scholar

Rights and permissions

Reprints and permissions

About this article

Cite this article

Hinds, P., Gattuso, J., Fletcher, A. et al. Quality of life as conveyed by pediatric patients with cancer. Qual Life Res 13, 761–772 (2004). https://doi.org/10.1023/B:QURE.0000021697.43165.87

Download citation

  • Issue Date:

  • DOI: https://doi.org/10.1023/B:QURE.0000021697.43165.87

Search

Navigation