A Review on Palliative Care Research Outcomes: Focus on the Quality of Life

완화의료연구에서의 결과에 대한 검토: 삶의 질을 중심으로

  • Hwang, In-Cheol (Department of Family Medicine, Gachon University Gil Hospital) ;
  • Ahn, Hong-Yup (Department of Statistics, Dongguk University-Seoul)
  • Received : 2012.08.06
  • Accepted : 2012.08.16
  • Published : 2012.09.01

Abstract

Over the past several decades, the assessment of quality of life (QoL) has increasingly played a prominent role in both clinical practice and research regardless of the medical field. Palliative care is defined as an approach that improves the QoL of patients and their families and optimizing their QoL is the primary goal of palliative care. However, it is difficult to compare related studies due to several obstacles such as discrepancies in definitions for palliative medicine, lack of consensus on the central domains and diverse instruments. In this paper, we examined the current status of and challenges in QoL studies and discussed possible solutions. We are convinced this review will be helpful for further palliative care studies.

과거 수십 년에 걸쳐 '삶의 질'은 의학의 분야를 막론하고 임상과 연구 모두에서 그 중요성이 더해 가고 있다. 완화의료는 환자와 그 가족의 삶의 질 향상시키기 위한 활동으로 정의되며, 그들의 삶의 질 향상이 완화의료의 가장 중요한 목표이다. 하지만, 이질적인 정의, 세부항목의 불일치, 도구의 다양성 등으로 인해 연구간 비교가 어려운 실정이다. 본 고에서는 지금까지의 연구동향과 문제점, 그리고 그 해결책에 대해 논의해 보았으며, 향후 완화의료분야 연구에 도움이 되리라 확신한다.

Keywords

References

  1. Higginson IJ, Carr AJ. Measuring quality of life: Using quality of life measures in the clinical setting. BMJ 2001;322:1297-300. https://doi.org/10.1136/bmj.322.7297.1297
  2. World Health Organization. WHO definition of palliative care [Internet]. Geneva: World Health Organization; c2012. [cited 2012 May 22]. Available from: http://www.who.int/cancer/palliative/definition/en/.
  3. American Society of Clinical Oncology. Outcomes of cancer treatment for technology assessment and cancer treatment guidelines. J Clin Oncol 1996;14:671-9. https://doi.org/10.1200/JCO.1996.14.2.671
  4. Buchanan DR, O'Mara AM, Kelaghan JW, Minasian LM. Quality-of-life assessment in the symptom management trials of the National Cancer Institute-supported Community Clinical Oncology Program. J Clin Oncol 2005;23:591-8. https://doi.org/10.1200/JCO.2005.12.181
  5. Siddiqui F, Kachnic LA, Movsas B. Quality-of-life outcomes in oncology. Hematol Oncol Clin North Am 2006;20:165-85. https://doi.org/10.1016/j.hoc.2006.01.003
  6. Hui D, Parsons HA, Damani S, Fulton S, Liu J, Evans A, et al. Quantity, design, and scope of the palliative oncology literature. Oncologist 2011;16:694-703. https://doi.org/10.1634/theoncologist.2010-0397
  7. Pastrana T, Junger S, Ostgathe C, Elsner F, Radbruch L. A matter of definition--key elements identified in a discourse analysis of definitions of palliative care. Palliat Med 2008;22:222-32. https://doi.org/10.1177/0269216308089803
  8. American Academy of Hospice and Palliative Medicine, Center to Advance Palliative Care, Hospice and Palliative Nurses Association, Last Acts Partnership, National Hospice and Palliative Care Organization. National Consensus Project for Quality Palliative Care: Clinical Practice Guidelines for quality palliative care, executive summary. J Palliat Med 2004;7:611-27. https://doi.org/10.1089/jpm.2004.7.611
  9. Mularski RA, Curtis JR, Billings JA, Burt R, Byock I, Fuhrman C, et al. Proposed quality measures for palliative care in the critically ill: a consensus from the Robert Wood Johnson Foundation Critical Care Workgroup. Crit Care Med 2006;34(11 Suppl):S404-11. https://doi.org/10.1097/01.CCM.0000242910.00801.53
  10. Miyashita M, Nakamura A, Morita T, Bito S. Identification of quality indicators of end-of-life cancer care from medical chart review using a modified Delphi method in Japan. Am J Hosp Palliat Care 2008;25:33-8. https://doi.org/10.1177/1049909107307376
  11. Seow H, Snyder CF, Shugarman LR, Mularski RA, Kutner JS, Lorenz KA, et al. Developing quality indicators for cancer end-of-life care: proceedings from a national symposium. Cancer 2009;115:3820-9. https://doi.org/10.1002/cncr.24439
  12. Pastrana T, Radbruch L, Nauck F, Hover G, Fegg M, Pestinger M, et al. Outcome indicators in palliative care--how to assess quality and success. Focus group and nominal group technique in Germany. Support Care Cancer 2010;18:859-68. https://doi.org/10.1007/s00520-009-0721-4
  13. Stiel S, Pastrana T, Balzer C, Elsner F, Ostgathe C, Radbruch L. Outcome assessment instruments in palliative and hospice care-a review of the literature. Support Care Cancer 2012. Epub 2012 Mar 13.
  14. Beller E, Tattersall M, Lumley T, Levi J, Dalley D, Olver I, et al. Improved quality of life with megestrol acetate in patients with endocrine-insensitive advanced cancer: a randomised placebo-controlled trial. Australasian Megestrol Acetate Cooperative Study Group. Ann Oncol 1997;8:277-83. https://doi.org/10.1023/A:1008291825695
  15. Detmar SB, Aaronson NK, Wever LD, Muller M, Schornagel JH. How are you feeling? Who wants to know? Patients' and oncologists' preferences for discussing health-related quality-of-life issues. J Clin Oncol 2000;18:3295-301. https://doi.org/10.1200/JCO.2000.18.18.3295
  16. Detmar SB, Muller MJ, Schornagel JH, Wever LD, Aaronson NK. Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial. JAMA 2002;288:3027-34. https://doi.org/10.1001/jama.288.23.3027
  17. Velikova G, Booth L, Smith AB, Brown PM, Lynch P, Brown JM, et al. Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. J Clin Oncol 2004;22:714-24. https://doi.org/10.1200/JCO.2004.06.078
  18. Mularski RA, Rosenfeld K, Coons SJ, Dueck A, Cella D, Feuer DJ, et al. Measuring outcomes in randomized prospective trials in palliative care. J Pain Symptom Manage 2007;34(1 Suppl):S7-S19. https://doi.org/10.1016/j.jpainsymman.2007.01.003
  19. Aktas A, Walsh D, Rybicki L. Symptom clusters: myth or reality? Palliat Med 2010;24:373-85. https://doi.org/10.1177/0269216310367842
  20. Ganz PA. Quality of life across the continuum of breast cancer care. Breast J 2000;6:324-30. https://doi.org/10.1046/j.1524-4741.2000.20042.x
  21. Medvec VH, Madey SF, Gilovich T. When less is more: counterfactual thinking and satisfaction among Olympic medalists. J Pers Soc Psychol 1995;69:603-10. https://doi.org/10.1037/0022-3514.69.4.603
  22. Calman KC. Quality of life in cancer patients--an hypothesis. J Med Ethics 1984;10:124-7. https://doi.org/10.1136/jme.10.3.124
  23. Postulart D, Adang EM. Response shift and adaptation in chronically ill patients. Med Decis Making 2000;20:186-93. https://doi.org/10.1177/0272989X0002000204
  24. Schwartz CE, Sprangers MA. Methodological approaches for assessing response shift in longitudinal health-related quality-of-life research. Soc Sci Med 1999;48:1531-48. https://doi.org/10.1016/S0277-9536(99)00047-7
  25. Norman G. Hi! How are you? Response shift, implicit theories and differing epistemologies. Qual Life Res 2003;12:239-49. https://doi.org/10.1023/A:1023211129926
  26. Sales AE, Plomondon ME, Magid DJ, Spertus JA, Rumsfeld JS. Assessing response bias from missing quality of life data: the Heckman method. Health Qual Life Outcomes 2004;2:49. https://doi.org/10.1186/1477-7525-2-49
  27. Rubin DB. Multiple imputation after 18+ years. J Am Stat Assoc 1996;91:473-89. https://doi.org/10.1080/01621459.1996.10476908
  28. Hambleton RK, Swaminathan H, Rogers HJ. Fundamentals of item response theory. Newbury Park:Sage publications;1991.
  29. Wyrwich KW, Bullinger M, Aaronson N, Hays RD, Patrick DL, Symonds T, et al. Estimating clinically significant differences in quality of life outcomes. Qual Life Res 2005;14:285-95. https://doi.org/10.1007/s11136-004-0705-2