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Appropriate time frames for data collection in quality of life research among cancer patients at the end of life

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Abstract

Longitudinal research has been recommended as the most appropriate research design to ensure the validity of quality of life assessments. However, high attrition and non-random missing data in quality of life studies for terminal cancer patients raise questions about generalizability of the study, and at worst they may jeopardize interpretation of the results. Appropriate time frames for eliciting information directly from terminal cancer patients can ensure the internal and external validity of quality of life research in end-of-life care, allow health care professionals to detect sensitively the effects of end-of-life care within the shortest intervention period, and make comparisons across studies possible. From a review of the literature, it is recommended that the appropriate time frame for interviewing terminal cancer patients about their quality of life be a weekly assessment schedule based on the following factors: (a) the median survival of terminal cancer patients enrolling in a hospice/palliative care program is approximately 30 days and there are substantial number of patients who die in each week; (b) at the final weeks of life, quality of life and symptoms of some terminal cancer patients change dramatically; and (c) the shortest intervention period that is likely to give a clinically significant effect of end-of-life care management is 1 week after the enrollment in end-of-life care.

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References

  1. American Geriatrics Society. The care of dying patients: A position statement for the American Geriatrics Society. J Am Geriatr Soc 1995; 43: 577–578.

    Google Scholar 

  2. Field MJ, Cassell C. Approach Death: Improving Care at the End of Life Institute of Medicine. Washington, DC: National Academy Press, 1997.

    Google Scholar 

  3. World Health Organization. Cancer Pain Relief and Palliative Care. Geneva: Technical Report Series No 804. 1997; 11.

  4. Cohen SR, Mount BM. Quality of life in terminal illness: Defining and measuring subjective well-being in the dying. J Palliat Care 1992; 8(3): 40–45.

    Google Scholar 

  5. Finaly IG, Dunlop R. Quality of life assessment in palliative care. Ann Oncol 1994; 5: 13–18.

    Google Scholar 

  6. Hopwood P, Stephens RJ, Machin D. Approaches to the analysis of quality of life data: Experiences gained from a Medical Research Council Lung Cancer Working party palliative chemotherapy trial. Qual Life Res 1994; 3: 339–352.

    Google Scholar 

  7. Gotay CC, Korn EL, McCabe MS, Moore TD, Cheson BD. Quality-of-life assessment in cancer treatment protocols: Research issues in protocol development. J Natl Cancer Inst 1992; 84: 575–579.

    Google Scholar 

  8. Moinpour CM. Do quality of life assessments make a difference in the evaluation of cancer treatment? Controlled Clin Trials 1997; 18: 311–317.

    Google Scholar 

  9. Grande GE, Todd CJ. Why are trials in palliative care so difficult? Palliat Med 2000; 14: 69–74.

    Google Scholar 

  10. Montazeri A, Gillis CR, McEwen J. Quality of life in patients with lung cancer: A review of literature from 1970 to 1995. Chest 1998; 113: 467–481.

    Google Scholar 

  11. Aaronson NK. Methodologic issues in assessing the quality of life of cancer patients. Cancer 1991; 67: 844–850.

    Google Scholar 

  12. Groenvold M. Methodological issues in the assessment of health-related quality of life in palliative care trials. Acta Anaesthesio Scand 1999; 43: 948–953.

    Google Scholar 

  13. Jordhoy MS, Kaasa S, Fayers P, Ovreness T, Underland G, Ahlner-Elmqvist M. Challenges in palliative care research: Recruitment, attrition and compliance: Experience from a randomized controlled trial. Palliat Med 1999; 13: 299–310.

    Google Scholar 

  14. Bhaskar R. Reclaiming reality: A critical introduction to contemporary philosophy. London: Verso. 1989.

    Google Scholar 

  15. Allison PJ, Locjer D, Feine JS. Quality of life: A dynamic construct. Soc Sci Med 1997; 45: 221–230.

    Google Scholar 

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

    Google Scholar 

  17. Nayfield SG, Hailey BJ, McCabe M. Quality of life assessment in cancer clinical trials. Report of the workshop on quality of life research in cancer clinical trials, July 16–17, 1990. Bethesda: US Department of Health and Human Services, NCI, NIH, 1991.

    Google Scholar 

  18. Ingleton C, Faulkner A. Quality assurance in palliative care: Some of the problems. Eur J Cancer Care 1995; 4: 38–44.

    Google Scholar 

  19. Mor V. Assessing patient outcomes in hospice: What to measure? Hosp J 1986; 2(3): 17–35.

    Google Scholar 

  20. Donabedian A. The quality of care: How can it be assessed? J Am Med Assoc 1988; 206: 1743–1748.

    Google Scholar 

  21. Hearn J, Higginson IJ. Outcome measures in palliative care for advanced cancer patients: A review. J Public Health Med 1997; 19: 193–199.

    Google Scholar 

  22. Rinck GC, van den Bos GAM, Kleijnen J, de Haes HJCJM, Schade E, Veenhof CHN. Methodologic issues in effectiveness research on palliative cancer care: A systematic review. J Clin Oncol 1997; 15: 1697–1707.

    Google Scholar 

  23. Osoba D. Rationale for the timing of health-related quality-of-life (HQL) assessments in oncological palliative therapy. Cancer Treat Rev 1996; 22(Suppl A): 69–73.

    Google Scholar 

  24. McMillian SC, Mahon M. A study of quality of life of hospice patients at admission and at week 3. Cancer Nurs 1994; 17: 52–60.

    Google Scholar 

  25. McMillian SC, Mahon M. The impact of hospice services on the quality of life of primary caregivers. Oncol Nurs Forum 1994; 21: 1189–1195.

    Google Scholar 

  26. McMillian SC. The quality of life of patients with cancer receiving hospice care. Oncol Nurs Forum 1996; 23: 1221–1228.

    Google Scholar 

  27. Tierney RM, Horton SM, Hannan TJ, Tierney WM. Relationships between symptom relief, quality of life, and satisfaction with hospice care. Palliat Med 1998; 12: 333–344.

    Google Scholar 

  28. Kane RL, Wales J, Bernstein L, Leibowitz A, Kaplan S. A randomised controlled trial of hospice care. Lancet 1984; 1(8382): 890–894.

    Google Scholar 

  29. Kane RL, Bernstein L, Wales J, Rothenberg R. Hospice effectiveness in controlling pain. J Am Med Assoc 1985; 253: 2683–2686.

    Google Scholar 

  30. Kane RL, Klein SJ, Bernstein L, Rothenberg R, Wales J. Hospice role in alleviating the emotional stress of terminal patients and their families. Med Care 1985; 23: 189–197.

    Google Scholar 

  31. Hinton J. Can home care maintain an acceptable quality of life for patients with terminal cancer and their relatives? Palliat Med 1994; 8: 183–196.

    Google Scholar 

  32. Mandelblatt JS, Eisenberg JM. Historical and methodological perspectives on cancer outcomes research. Oncology 1995; 9(Suppl 11): 23–32.

    Google Scholar 

  33. Fowler FJ Jr, Coppola KM, Teno JM. Methodological challenges for measuring quality of care at the end of life. J Pain Symptom Manage 1999; 17: 114–119.

    Google Scholar 

  34. Lynn J, Harrell F Jr, Cohn F, Wagner D, Connors AF Jr. Prognoses of seriously ill hospitalized patients on the days before death: Implications for patient care and public policy. New Horizons 1997; 5: 56–61.

    Google Scholar 

  35. Vigano A, Dorgan M, Bruera E, Suarez-Almazor ME. The relative accuracy of the clinical estimation of the duration of life for patients with end of life cancer. Cancer 1999; 86: 170–176.

    Google Scholar 

  36. Anderson JP, Kaplan RM, Schneiderman LJ. Effects of offering advance directives on quality adjusted life expectancy and psychological well-being among ill adults. J Clin Epidem 1994; 47: 761–772.

    Google Scholar 

  37. Donaldson MS, Field MJ. Measuring quality of care at the end of life. Arch Intern Med 1998; 158: 121–128.

    Google Scholar 

  38. Christakis NA, Escarce JJ. Survival of medicare patients after enrollment in hospice programs. New Engl J Med 1996; 335: 172–178.

    Google Scholar 

  39. Morris JN, Mor V, Goldberg RJ, Sherwood S, Greer DS, Hiris J. The effect of treatment setting and patient characteristics on pain in terminal cancer patients: A report from the National Hospice Study. J Chronic Dis 1986; 39: 27–35.

    Google Scholar 

  40. Morris JN, Suissa S, Sherwood S, Wright SM, Greer D. Last days: A study of the quality of life of terminally ill cancer patients. J Chronic Dis 1986; 39: 47–62.

    Google Scholar 

  41. Higginson I, McCarthy M. Measuring symptoms in terminal cancer: Are pain and dyspnea controlled? J Royal Society Med 1989; 82: 264–267.

    Google Scholar 

  42. Wachtel T, Allen-Masterson S, Reuben D, Goldberg R, Mor V. The end stage of cancer patient: Terminal common pathway. Hosp J 1988; 4(4): 43–80.

    Google Scholar 

  43. Coyle N, Adelhardt J, Foley K, Portenoy RK. Character of terminal illness in the advanced cancer patient: Pain and other symptoms during the last four weeks of life. J Pain Symptom Manage 1990; 5: 58–93.

    Google Scholar 

  44. Morita T, Ichiki T, Tsunoda J, Inoue S, Chihara S. A prospective study on the dying process in terminally ill cancer patients. Am J Hosp Palliat Care 1998; 15: 217–222.

    Google Scholar 

  45. Pereira J, Hanson J, Bruera E. The frequency and clinical course of cognitive impairment in patients with terminal cancer. Cancer 1997; 79: 835–842.

    Google Scholar 

  46. Fainsinger R, Miller MJ, Bruera D, Hanson J, Maceachern T. Symptom control during the last week of life on a palliative care unit. J Palliat Care 1991; 7: 5–11.

    Google Scholar 

  47. Hardy JR, Edmonds P, Turner R, Rees E, A'Hern R. The use of the Rotterdam Symptom Checklist in palliative care. J Pain Symptom Manage 1999; 18: 79–84.

    Google Scholar 

  48. Higginson IJ, Hearn J. A multicenter evaluation of cancer pain controlled by palliative care teams. J Pain Symptom Manage 1997; 14: 29–35.

    Google Scholar 

  49. Edmonds PM, Stuttaford JM, Penny J, Lynch AM, Chamberlain J. Do hospital palliative care teams improve symptom control? Use of a modified STAS as an evaluation tool? Palliat Med 1998; 12: 345–351.

    Google Scholar 

  50. Peruselli C, Marinari M, Brivio B, et al. Evaluating a home palliative care service: Development of indicators for a continuous quality improvement program. J Palliat Care 1997; 13: 34–42.

    Google Scholar 

  51. Peruselli C, Paci E, Franceschi P, Legori T, Mannucci F. Outcome evaluation in a home palliative care service. J Pain Symptom Manage 1997; 13: 158–165.

    Google Scholar 

  52. Lo RSK, Ding A, Chung TK, Woo J. Prospective study of symptom control in 133 cases of palliative care in patients in Shatin hospital. Palliat Med 1999; 13: 335–340.

    Google Scholar 

  53. Ellershaw JE, Peat SJ, Boys L. Assessing the effectiveness of a hospital palliative care team. Palliat Med 1995; 9: 145–152.

    Google Scholar 

  54. Gough IR, Furnival CM, Schilder L, Grove W. Assessment of the quality of life of patients with advanced cancer. Eur J Cancer Clin Oncol 1983; 19: 1161–1165.

    Google Scholar 

  55. Ventafridda V, De Conno F, Ripamonti C, Gamba A, Tamburini M. Quality-of-life assessment during a palliative care programme. Ann Oncol 1990; 1: 415–420.

    Google Scholar 

  56. Higginson I, Priest P, McCarthy M. Are bereaved family members a valid proxy for a patient's assessment of dying. Soc Sci Med 1994; 38: 553–557.

    Google Scholar 

  57. Rathbone GV, Horsley S, Goacher J. A self-evaluated assessment suitable for seriously ill hospice patients. Palliat Med 1994; 8: 29–34.

    Google Scholar 

  58. De Conno F, Caraceni A, Groff L, Brunelli C, Donati I, Tamburini M, Ventafridda V. Effect of home care on the place of death of advanced cancer patients. Eur J Cancer 1996; 32A: 1142–1147.

    Google Scholar 

  59. Grassi L, Indelli M, Maltoni M, Falcini F, Fabbri L, Indelli R. Quality of life of homebound patients with advanced cancer: Assessments by patients, family members, and oncologists. J Psychosoc Oncol 1996; 14(3): 31–43.

    Google Scholar 

  60. Axelsson B, Sjoden PO. Quality of life of cancer patients and their spouses in palliative home care. Palliat Med 1998; 12: 29–39.

    Google Scholar 

  61. Smeenk FWJM, de Witte LP, van Haastregt JCM, Schipper M, Biezemans HPH, Crebolder HFJM. Transmural care. A new approach in the care for terminal cancer patients: Its effects on re-hospitalization and quality of life. Patient Educ Couns 1998; 35: 189–199.

    Google Scholar 

  62. Bretscher M, Rummans T, Sloan J, et al. Quality of life in hospice patients: A pilot study. Psychosomat 1999; 40: 309–313.

    Google Scholar 

  63. Peruselli C, Di Giulio P, Toscani F, et al. Home palliative care for terminal cancer patients: A survey on the final week of life. Palliat Med 1999; 13: 233–241.

    Google Scholar 

  64. Schonwetter RS, Robinson BE, Ramirez G. Prognostic factors for survival in terminal lung cancer patients. J Gen Intern Med 1994; 9: 366–371.

    Google Scholar 

  65. Schonwetter RS, Teasdale TA, Storey P, Luchi RJ. Estimation of survival time in terminal cancer patients: An impedance to hospice admissions? Hosp J 1990; 6(4): 65–79.

    Google Scholar 

  66. Maltoni M, Pirovano M, Scarpi E, et al. Prediction of survival of patients terminally ill with cancer. Cancer 1995; 75: 2613–2622.

    Google Scholar 

  67. Allard P, Dionne A, Potvin D. Factors associated with length of survival among 1081 terminally ill cancer patients. J Palliat Care 1995; 11(3): 20–24.

    Google Scholar 

  68. Costantini M, Toscani F, Gallucci M, et al. Terminal cancer patients and timing of referral to palliative care: A multicenter prospective cohort study. J Pain Symptom Manage 1999; 18: 243–252.

    Google Scholar 

  69. Peruselli C, Camporesi E, Colombo AM, Cucci M, Mazzoni G, Paci E. Quality-of-life assessment in a home care program for advanced cancer patients: A study using the symptom distress scale. J Pain Symptom Manage 1993; 8: 306–311.

    Google Scholar 

  70. Twycross R, Harcourt J, Bergl S. A survey of pain in patients with advanced cancer. J Pain Symptom Manage 1996; 12: 273–282.

    Google Scholar 

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  1. School of Nursing, Yale University, New Haven, CT, USA

    Siew Tzuh Tang & Ruth McCorkle

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Tang, S.T., McCorkle, R. Appropriate time frames for data collection in quality of life research among cancer patients at the end of life. Qual Life Res 11, 145–155 (2002). https://doi.org/10.1023/A:1015021531112

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