Assessing quality of life in palliative care

  • Marianne J. Brady
  • David Cella
Part of the Cancer Treatment and Research book series (CTAR, volume 100)


Interventions in oncology are targeted toward three possible goals: cure, life extension, or palliation. In curative treatment, disease eradication is the primary target. Treatment decisions are largely based on data gathered from a number of objective tests, e.g., laboratory and radiographic procedures. Primary outcome measures include disease-free survival time and tumor response. While there is usually a high degree of tolerance for acute side effects and diminished quality of life (QOL), it is increasingly recognized that even with curative treatments, QOL is an important outcome [1-8]. QOL information can be used to help decide between two treatments of equal curative value and can assist patients in making truly informed decisions regarding the actual burden of the treatment they are undertaking. However, in palliative care, improved QOL is the overriding goal. As stated by the World Health Organization (WHO), Control of pain, of other symptoms, and of psychological, social, and spiritual problems is paramount. The goal of palliative care is the achievement of the best possible QOL for patients and their families [9].


Palliative Care Palliative Setting Palliative Care Setting Palliative Care Population Poor Family Communication 
These keywords were added by machine and not by the authors. This process is experimental and the keywords may be updated as the learning algorithm improves.


Unable to display preview. Download preview PDF.

Unable to display preview. Download preview PDF.


  1. 1.
    Cella DR 1992. Quality of life: The concept. J Palliat Care 8(3):8–13.PubMedGoogle Scholar
  2. 2.
    Aaronson NK, Bullinger M, Ahmedzai S. 1988. A modular approach to quality-of-life assessment in cancer clinical trials. Recent Results Cancer Res 111:231–249.PubMedCrossRefGoogle Scholar
  3. 3.
    Cella DF, Cherin EA. 1988. Quality of life during and after cancer treatment. Compr Ther 14(5):69–75.PubMedGoogle Scholar
  4. 4.
    Spitzer WO, Dobson AJ, Hall J, Chesterman E, Levi J, Shepherd R, Battista RN, Catchlove BR. 1981 Measuring the quality of life of cancer patients: a concise QL-Index for use by physicians. J Chron Dis 34:585–597.PubMedCrossRefGoogle Scholar
  5. 5.
    Aaronson NK, Ahmedzai S, Bergman B, et al. 1993. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality of life instrument for use in international clinical trials. J Natl Cancer Inst 85(5):365–376.PubMedCrossRefGoogle Scholar
  6. 6.
    Schipper H, Clinch J, McMurray A, Leavitt M. 1984. Measuring the quality of life of cancer patients: the functional living index — cancer: Development and validation. J Clin Oncol 2:472–483.PubMedGoogle Scholar
  7. 7.
    Cella DF, Tulsky DS, Gray G, et al. 1993. The Functional Assessment of Cancer Therapy (FACT) scale: development and validation of the general measure. J Clin Oncol 11:570–579.PubMedGoogle Scholar
  8. 8.
    Schag CAC, Ganz P, Heinrich RL. 1991 Cancer Rehabilitation Evaluation System — Short Form: a cancer specific rehabilitation and quality of life instrument. Cancer 68(6):1406–1413.PubMedCrossRefGoogle Scholar
  9. 9.
    World Health Organization. 1990. Technical Report Series 804. In Cancer Pain and Palliative Care. Geneva: World Health Organization, 11Google Scholar
  10. 10.
    Priestman TJ, Baum M. 1976. Evaluation of quality of life in patients receiving treatment for advanced breast cancer. Lancet 1:899–901PubMedCrossRefGoogle Scholar
  11. 11.
    Shumaker SA, Naughton MJ. 1995. The international assessment of health-related quality of life: a theoretical perspective. In Shumaker SA, Berzon R (eds), The International Assessment of Health-Related Quality of Life, New York: Rapid Communications, 3–10.Google Scholar
  12. 12.
    Cella DF, Tulsky DS. 1993. Quality of life in cancer: definition, purpose, and method of measurement. Cancer Invest 11(3):327–336.PubMedCrossRefGoogle Scholar
  13. 13.
    Donovan K, Sanson-Fisher RW, Redman S. 1989. Measuring quality of life in cancer patients. J Clin Oncol 7(7):959–968.PubMedGoogle Scholar
  14. 14.
    The WHOQOL Group. 1995. The World Health Organization Quality of Life Assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 41(10):1403–1409.CrossRefGoogle Scholar
  15. 15.
    Ferrell B, Grant M, Schmidt GM, Rhiner M, Whitehead C, Fonbuena P, Forman SJ. 1992. The meaning of quality of life for bone marrow transplant survivors. Part I. The impact of bone marrow transplant on quality of life. Cancer Nurs 15(3): 153–160.PubMedCrossRefGoogle Scholar
  16. 16.
    Grant M, Ferrell B, Schmidt GM, Fonbuena P, Niland JC, Forman SJ. 1992. Measurement of quality of life in bone marrow transplantation survivors. Qual Life Res 1:375–388.PubMedCrossRefGoogle Scholar
  17. 17.
    Cohen RS, Mount BM, Bruera E, Provost M, Rowe J, Tong K. 1997. Validity of the McGill quality of life questionnaire in the palliative care setting: a multi-center Canadian study demonstrating the importance of the existential domain. Palliat Med 11:3–20.PubMedCrossRefGoogle Scholar
  18. 18.
    Cohen SR, Mount B. 1992. Quality of life in terminal illness: defining and measuring subjective well-being in the dying. J Palliat Care 8(3):40–45.PubMedGoogle Scholar
  19. 19.
    Field MJ, Cassel CK (eds), for the Institute of Medicine. 1997. Approaching Death: Improving Care at the End of Life. Washington, DC: National Academy Press.Google Scholar
  20. 20.
    Brady MJ, Peterman AH, Fitchett G, Mo M, Cella D. In press. A case for including spirituality in quality of life measurement in oncology. Psycho-Oncology.Google Scholar
  21. 21.
    Cassell E. 1991 The Nature of Suffering and the Goals of Medicine. New York: Oxford University Press.Google Scholar
  22. 22.
    Cassell EJ. 1982. The nature of suffering and the goals of medicine. N Engl J Med 306:639–645.CrossRefGoogle Scholar
  23. 23.
    Portenoy RK. 1991 Pain and quality of life: clinical issues and implications for research. In Tchekmedyian NS, Cella DF (eds), Quality of Life in Oncology Practice and Research. New York: Dominus, 95–101Google Scholar
  24. 24.
    Calman KC. 1984. Quality of life in cancer patients: an hypothesis. J Med Ethics 10:124–127.PubMedCrossRefGoogle Scholar
  25. 25.
    Andrukowski MA, Brady MJ, Greiner CB, Altmaier EM, Burish TG, Antin JH, Gingrich R, McGarigle C, Henslee-Downey PJ. 1995. ‘Returning to normal’ following bone marrow transplantation: outcomes, expectations and informed consent. Bone Marrow Transplant 15(4): 573–581Google Scholar
  26. 26.
    Cella DF, Mahon SM, Donovan MI. 1990. Cancer recurrence as a traumatic event. Behav Med 16(l):15–22.PubMedCrossRefGoogle Scholar
  27. 27.
    MacAdam DB, Smith M. 1987. An initial assessment of suffering in terminal illness. Med Care 25(7):642–651CrossRefGoogle Scholar
  28. 28.
    Fowlie M, Berkeley J. 1989. Quality of life in advanced cancer: the benefits of asking the patient. Palliat Med 3:55–59.CrossRefGoogle Scholar
  29. 29.
    Wallston KA, Burger C, Smith RA, Baugher RJ. 1988. Comparing the quality of death for hospice and non-hospice cancer patients. Med Care 26(2):177–182.PubMedCrossRefGoogle Scholar
  30. 30.
    Karnofsky DA, Abelman WH, Craver LF, Burchenal JH. 1948. The use of nitrogen mustards in the palliative treatment of carcinoma. Cancer 1:634–656.CrossRefGoogle Scholar
  31. 31.
    Byock IR. 1994. When suffering persists. J Palliat Care 10(2):8–13.PubMedCrossRefGoogle Scholar
  32. 32.
    Gough IR, Furnival CM, Schilder L, Grove W 1983. Assessment of the quality of life of patients with advanced cancer. Eur J Cancer Clin Oncol 19:1161–1165.PubMedCrossRefGoogle Scholar
  33. 33.
    Conill C, Verger E, Henriquez I, Saiz N, Espier M, Lugo F, Garrigos A. 1997. Symptom prevalence in the last week of life. J Pain Symptom Managern 14(6):328–331CrossRefGoogle Scholar
  34. 34.
    Cherny N, Coyle N. 1994. Suffering in the advanced cancer patient: definition and taxonomy. J Palliat Care 10(2):57–70.PubMedGoogle Scholar
  35. 35.
    Donnelly S, Walsh D. 1995. The symptoms of advanced cancer: identification of clinical and research priorities by assessment of prevalence and severity. J Palliat Care 11(l):27–32.PubMedGoogle Scholar
  36. 36.
    Greisinger A, Lorimor RJ, Aday LA, Winn R, Baile W. 1997. Terminally iii cancer patients. Their most important concerns. Cancer Pract 5(3):147–154.PubMedGoogle Scholar
  37. 37.
    Sterkenburg CA, King B, Woodward CA. 1996. A reliability and validity study of the McMaster quality of life scale (MQLS) for a palliative population. J Palliat Care 12(l):18–25.PubMedGoogle Scholar
  38. 38.
    Richards MA. 1997. Quality of life: the main outcome measure of palliative care. Palliat Med 11:89–92.PubMedCrossRefGoogle Scholar
  39. 39.
    Cella DF, Jacobsen PB, Orav EJ, et al. 1987. A brief POMS measure of distress for cancer patients. J Chron Dis 40(10):939–942.PubMedCrossRefGoogle Scholar
  40. 40.
    Cella DF, Bonomi AE. 1995. Measuring quality of life: 1995 update. Oncology 9(11, Suppl):47–60.PubMedGoogle Scholar
  41. 41.
    Donnelly S, Walsh D. 1996. Quality of life assessment in advanced cancer. Palliat Med 10:275–283.PubMedCrossRefGoogle Scholar
  42. 42.
    Cella DF. 1997. Manual of the Functional Assessment of Chronic Illness Therapy (FACIT Scales) — Version 4. Evanston, IL: Center on Outcomes Research and Education (CORE), Evanston Northwestern Healthcare and Northwestern University, IL, November.Google Scholar
  43. 43.
    Greisinger A. 1998. Quality of life in terminally ill cancer patients. Presented at Supportive Care in Cancer, San Antonio, TX, March.Google Scholar
  44. 44.
    Ahmedzai S, Arrasas JI, Eisemann M, Kaasa S, Meyza J, Nordenstamm M, Schraub S, Wright S. 1994. Development of an appropriate quality of life measure for palliative care. Qual of Life Res 3:57–64.CrossRefGoogle Scholar
  45. 45.
    Sprangers MAG, Aaronson NK. 1992. The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: a review. J Clin Epidemiol 45:743–760.PubMedCrossRefGoogle Scholar
  46. 46.
    Slevin ML, Plant H, Lunch D, Drinkwater J, Gregory WM. 1988. Who should measure quality of life, the doctor or the patient? Br J Cancer 57:109–112.PubMedCrossRefGoogle Scholar
  47. 47.
    Passik SD, Dugan W, McDonald MV, Rosenfeld B, Theobald DE, Edgerton S. 1998. Oncologists’ recognition of depression in their patients with cancer. J Clin Onc 16:1594–1600.Google Scholar
  48. 48.
    Grande GE, Barclay SIG, Todd CJ. 1997. Difficulty of symptom control and general practitioner’s knowledge of patients’ symptoms. Palliat Med 11:339–406.CrossRefGoogle Scholar
  49. 49.
    de Haes JCS, van Knippenberg FCE. 1985. The quality of life of cancer patients: a review of the literature. Soc Sci Med 20:809–817.PubMedCrossRefGoogle Scholar
  50. 50.
    Higginson IJ, McCarthy M. 1994. A comparison of two measures of quality of life: their sensitivity and validity for patients with advanced cancer. Palliat Med 8:282–290.PubMedCrossRefGoogle Scholar
  51. 51.
    Najman JM, Levine S. 1981 Evaluating the impact of medical care and technologies on the quality of life. Soc Sci Med 15:107–115.Google Scholar
  52. 52.
    Andrykowski MA, Brady MJ, Hunt JW. 1993. Positive psychosocial adjustment in potential bone marrow transplant recipients: cancer as a psychosocial transition. Psycho-Oncology 2:261–276.CrossRefGoogle Scholar
  53. 53.
    Kreitler S, Chaitnik S, Rapoport Y, Kreitler H, Algor R. 1993. Life satisfaction and health in cancer patients, orthopedic patients and healthy individuals. Soc Sci Med 36:547–556.PubMedCrossRefGoogle Scholar
  54. 54.
    Byock IR. 1996. The nature of suffering and the nature of opportunity at the end of life. Clin Geriatr Med 12:2–10.Google Scholar
  55. 55.
    Zinker J, Fink S. 1966. The possibility for psychological growth in a dying person. J Gen Psych 74:185–199.CrossRefGoogle Scholar
  56. 56.
    Rosenthal T. 1973. How Could I Not Be Among You? New York: Avon Books.Google Scholar
  57. 57.
    Ferrell BR, Dow KH, Leigh S, Ly J, Gulasekaram G. 1995. Quality of life in long-term cancer survivors. Oncol Nurs Forum 22(6):915–922.PubMedGoogle Scholar
  58. 58.
    Wyatt G, Friedman LL. 1996. Long-term female cancer survivors: quality of life issues and clinical implications. Cancer Nurs 19(1):1–7.PubMedCrossRefGoogle Scholar
  59. 59.
    Reed PG. 1987. Spirituality and well-being in terminally ill hospitalized adults. Res Nurs Health 10:335–344.PubMedCrossRefGoogle Scholar
  60. 60.
    Muldoon M, King N. 1995. Spirituality, health care, and bioethics. J Religion Health 34(4):329–349.CrossRefGoogle Scholar
  61. 61.
    Axelsson B, Sjoeden PO. 1998. Quality of life of cancer patients and their spouses in palliative home care. Palliat Med 12:29–39.PubMedCrossRefGoogle Scholar
  62. 62.
    Ahmedzai S. 1990. Measuring quality of life in hospice care. Oncology 4(5):115–119.PubMedGoogle Scholar
  63. 63.
    Berzon R, Shumaker SA. (eds). 1995. The International Assessment of Health-Related Quality of Life: Theory, Translation, Measurement & Analysis. New York: Rapid Communications, v–vi.Google Scholar
  64. 64.
    Feeny D, La Belle R, Torrance GW. 1990. Integrating economic evaluations and assessments. In Spilker B (eds), Quality of Life Assessments in Clinical Trials. New York: Raven Press, 71–83.Google Scholar
  65. 65.
    Von Gunten CF, Johnson Neely K, Martinez J, Lurie RH. 1996. Hospice and palliative care: program needs and academic issues. Oncology 10(7):1070–1080.Google Scholar

Copyright information

© Springer Science+Business Media New York 1999

Authors and Affiliations

  • Marianne J. Brady
  • David Cella

There are no affiliations available

Personalised recommendations