Quality of life and symptom intensity over time in people with cancer receiving palliative care: Results from the international European Palliative Care Cancer Symptom study

Autoři: Mariëtte N. Verkissen aff001;  Marianne J. Hjermstad aff002;  Simon Van Belle aff001;  Stein Kaasa aff004;  Luc Deliens aff001;  Koen Pardon aff001
Působiště autorů: End-of-Life Care Research Group, Department of Family Medicine and Chronic Care, Vrije Universiteit Brussel (VUB) & Ghent University, Brussels, Belgium aff001;  European Palliative Care Research Centre (PRC), Department of Oncology, Oslo University Hospital, and Institute of Clinical Medicine, University of Oslo, Oslo, Norway aff002;  Department of Medical Oncology, Ghent University Hospital, Ghent, Belgium aff003;  European Palliative Care Research Centre (PRC), Department of Cancer Research and Molecular Medicine, Faculty of Medicine, Norwegian University of Science and Technology (NTNU), Trondheim, Norway aff004;  Cancer Clinic, St. Olavs Hospital, Trondheim University Hospital, Trondheim, Norway aff005;  Department of Public Health and Primary Care, Ghent University, Ghent, Belgium aff006
Vyšlo v časopise: PLoS ONE 14(10)
Kategorie: Research Article
doi: 10.1371/journal.pone.0222988



People with advanced cancer experience multiple symptoms during their illness trajectory, which can fluctuate in intensity.


To describe the course of self-reported quality of life, emotional functioning, physical functioning and symptom intensity over time in cancer patients receiving palliative care.


Longitudinal study with monthly assessments, using the EORTC QLQ-C15-PAL. Data were analysed (1) prospectively, from baseline to ≥8-month follow-up; and (2) retrospectively, by taking death as index date and comparing results from three cross-sectional subsamples at different stages of illness (time to death ≥6, 5–3 and 2–0 months). Linear mixed models were calculated.


A total of 1739 patients (mean age 66, 50% male) from 30 palliative care centers in 12 countries were included.


In prospective analyses, quality of life, functioning and symptoms–except nausea/vomiting–remained generally stable over time. In retrospective analyses, patients 2–0 months before death reported significantly lower quality of life and physical functioning scores than those 5–3 months before death, who in turn scored lower than those ≥6 months before death, suggesting progressive decline. Emotional functioning remained initially unchanged, but decreased in the last months. Pain, fatigue and appetite loss showed a stable increase in intensity towards death. Dyspnea, insomnia and constipation increased from 5–3 to 2–0 months before death. Nausea/vomiting only increased when comparing those ≥6 months before death with those 2–0 months before death.


While the prospective approach showed predominantly stable patterns for quality of life, functioning and symptom severity throughout study duration, retrospective analyses indicated that deterioration was already apparent before the terminal phase and accelerated close to death. Our findings support the importance of early symptom identification and treatment in this population, and highlight the need for further studies to explore what characterizes those with either lower or higher symptom burden at different time points towards death.

Klíčová slova:

Cancer treatment – Dyspnea – Emotions – Fatigue – Insomnia – Oncology – Palliative care – Quality of life


1. Ahmedzai SH, Costa A, Blengini C, Bosch A, Sanz-Ortiz J, Ventafridda V, et al. A new international framework for palliative care. Eur J Cancer 2004; 40: 2192–200. doi: 10.1016/j.ejca.2004.06.009 15454244

2. Jemal A, Ward E, Thun M. Declining death rates reflect progress against cancer. PLOS ONE 2010; 5: e9584. doi: 10.1371/journal.pone.0009584 20231893

3. Teunissen SCCM, Wesker W, Kruitwagen C, de Haes HCJM, Voest EE, de Graeff A. Symptom prevalence in patients with incurable cancer: A systematic review. J Pain Symptom Manage 2007; 34: 94–104. doi: 10.1016/j.jpainsymman.2006.10.015 17509812

4. Tanaka K, Akechi T, Okuyama T, Nishiwaki Y, Uchitomi Y. Impact of dyspnea, pain, and fatigue on daily life activities in ambulatory patients with advanced lung cancer. J Pain Symptom Manage 2002; 23: 417–23. doi: 10.1016/s0885-3924(02)00376-7 12007759

5. Deshields TL, Potter P, Olsen S, Liu J, Dye L. Documenting the symptom experience of cancer patients. J Support Oncol 2011; 9: 216–23. doi: 10.1016/j.suponc.2011.06.003 22055891

6. Deshields TL, Potter P, Olsen S, Liu J. The persistence of symptom burden: Symptom experience and quality of life of cancer patients across one year. Support Care Cancer 2014; 22: 1089–96. doi: 10.1007/s00520-013-2049-3 24292095

7. McCarthy EP, Phillips RS, Zhong Z, Drews RE, Lynn J. Dying with cancer: Patients’ function, symptoms, and care preferences as death approaches. J Am Geriatr Soc 2000; 48: S110–21. doi: 10.1111/j.1532-5415.2000.tb03120.x 10809464

8. Rome RB, Luminais HH, Bourgeois DA, Blais CM. The role of palliative care at the end of life. Ochsner J 2011; 11: 348–52. 22190887

9. Lynn J, Adamson DM. Living well at the end of life: Adapting health care to serious chronic illness in old age. RAND Health 2003; 1–22.

10. Hjermstad MJ, Aass N, Aielli F, Bennett M, Brunelli C, Caraceni A, et al. Characteristics of the case mix, organisation and delivery in cancer palliative care: A challenge for good-quality research. BMJ Support Palliat Care 2018; 8: 456–67. doi: 10.1136/bmjspcare-2015-000997 27246166

11. Groenvold M, Petersen MA, Aaronson NK, Arraras JI, Blazeby JM, Bottomley A, et al. The development of the EORTC QLQ-C15-PAL: A shortened questionnaire for cancer patients in palliative care. Eur J Cancer 2006; 42: 55–64. doi: 10.1016/j.ejca.2005.06.022 16162404

12. Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, et al. The European Organization for Research and Treatment of Cancer QLQ-C30: A quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 1993; 85: 365–76. doi: 10.1093/jnci/85.5.365 8433390

13. Fayers P, Aaronson N, Bjordal K, Groenvold M, Curran D, Bottomley A, on behalf of the EORTC Quality of Life Group. The EORTC QLQ-C30 Scoring Manual (3rd Edition). Brussels, Belgium: European Organization for Research and Treatment of Cancer (EORTC), 2001.

14. Groenvold M, Petersen MA, on behalf of the EORTC Quality of Life Group. Addendum to the EORTC QLQ-C30 Scoring Manual: Scoring of the EORTC QLQ-C15-PAL. Brussels, Belgium: EORTC Quality of Life Unit, 2001.

15. Burnham KP, Anderson DR. Multimodel inference: Understanding AIC and BIC in model selection. Sociol Methods Res 2004; 33: 261–304.

16. Tang ST, Liu LN, Lin K-C, Chung J-H, Hsieh C-H, Chou W-C, et al. Trajectories of the multidimensional dying experience for terminally ill cancer patients. J Pain Symptom Manage 2014; 48: 863–74. doi: 10.1016/j.jpainsymman.2014.01.011 24742788

17. Mitchell AJ, Chan M, Bhatti H, Halton M, Grassi L, Johansen C. Prevalence of depression, anxiety, and adjustment disorder in oncological, haematological, and palliative-care settings: A meta-analysis of 94 interview-based studies. Lancet Oncol 2011; 12: 160–74. doi: 10.1016/S1470-2045(11)70002-X 21251875

18. Hotopf M, Chidgey J, Addington-Hall J, Lan Ly K. Depression in advanced disease: A systematic review Part 1. Prevalence and case finding. Palliat Med 2002; 16: 81–97. doi: 10.1191/0269216302pm507oa 11969152

19. Delgado-Guay MO, Parsons HA, Li Z, Palmer LJ, Bruera E. Symptom distress, interventions, and outcomes of intensive care unit cancer patients referred to a palliative care consult team. Cancer 2009; 115: 437–45. doi: 10.1002/cncr.24017 19107768

20. Seow H, Barbera L, Sutradhar R, Howell D, Dudgeon D, Atzema C, et al. Trajectory of performance status and symptom scores for patients with cancer during the last six months of life. J Clin Oncol 2011; 29: 1151–8. doi: 10.1200/JCO.2010.30.7173 21300920

21. Hwang SS, Chang VT, Fairclough DL, Cogswell J, Kasimis B. Longitudinal quality of life in advanced cancer patients: Pilot study results from a VA Medical Cancer Center. J Pain Symptom Manage 2003; 25: 225–35. doi: 10.1016/s0885-3924(02)00641-3 12614957

22. Elmqvist MA, Jordhøy MS, Bjordal K, Kaasa S, Jannert M. Health-related quality of life during the last three months of life in patients with advanced cancer. Support Care Cancer 2009; 17: 191–8. doi: 10.1007/s00520-008-0477-2 18581147

23. Lundh Hagelin C, Seiger A, Fürst CJ. Quality of life in terminal care–with special reference to age, gender and marital status. Support Care Cancer 2006; 14: 320–8. doi: 10.1007/s00520-005-0886-4 16189646

24. Giesinger JM, Wintner LM, Oberguggenberger AS, Gamper EM, Fiegl M, Denz H, et al. Quality of life trajectory in patients with advanced cancer during the last year of life. J Palliat Med 2011; 14: 904–12. doi: 10.1089/jpm.2011.0086 21711125

25. Tishelman C, Petersson L-M, Degner LF, Sprangers MAG. Symptom prevalence, intensity, and distress in patients with inoperable lung cancer in relation to time of death. J Clin Oncol 2007; 25: 5381–9. doi: 10.1200/JCO.2006.08.7874 18048819

26. Raijmakers NJH, Zijlstra M, van Roij J, Husson O, Oerlemans S, van de Poll-Franse LV. Health-related quality of life among cancer patients in their last year of life: Results from the PROFILES registry. Support Care Cancer 2018; 26: 1–8.

27. Barnes EA, Bruera E. Fatigue in patients with advanced cancer: A review. Int J Gynecol Cancer 2002; 12: 424–8. 12366656

28. Van den Beuken-van Everdingen MHJ, de Rijke JM, Kessels AG, Schouten HC, van Kleef M, Patijn J. Prevalence of pain in patients with cancer: A systematic review of the past 40 years. Ann Oncol 2007; 18: 1437–49. doi: 10.1093/annonc/mdm056 17355955

29. Davis MP, Dreicer R, Walsh D, Lagman R, LeGrand SB. Appetite and cancer-associated anorexia: A review. J Clin Oncol 2004; 22: 1510–7. doi: 10.1200/JCO.2004.03.103 15084624

30. Strömgren AS, Sjøgren P, Goldschmidt D, Petersen MA, Pedersen L, Groenvold M. Symptom priority and course of symptomatology in specialized palliative care. J Pain Symptom Manage 2006; 31: 199–206. doi: 10.1016/j.jpainsymman.2005.07.007 16563314

31. Solano JP, Gomes B, Higginson IJ. A comparison of symptom prevalence in far advanced cancer, AIDS, heart disease, chronic obstructive pulmonary disease and renal disease. J Pain Symptom Manage 2006; 31: 58–69. doi: 10.1016/j.jpainsymman.2005.06.007 16442483

32. Sigurdardottir KR, Haugen DF. Prevalence of distressing symptoms in hospitalised patients on medical wards: A cross-sectional study. BMC Palliat Care 2008; 7: 16. doi: 10.1186/1472-684X-7-16 18808724

33. Glare P, Miller J, Nikolova T, Tickoo R. Treating nausea and vomiting in palliative care: A review. Clin Interv Aging 2011; 6: 243–59. doi: 10.2147/CIA.S13109 21966219

34. Nekolaichuk CL, Bruera E, Spachynski K, MacEachern T, Hanson J, Maguire TO. A comparison of patient and proxy symptom assessments in advanced cancer patients. Palliat Med 1999; 13: 311–23. doi: 10.1191/026921699675854885 10659100

35. Luckett T, Butow PN, King MT. Improving patient outcomes through the routine use of patient-reported data in cancer clinics: Future directions. Psycho-Oncology 2009; 18: 1129–38. doi: 10.1002/pon.1545 19319920

36. McCarter K, Britton B, Baker A, Halpin S, Beck A, Carter G, et al. Interventions to improve screening and appropriate referral of patients with cancer for distress: Systematic review protocol. BMJ Open 2015; 5: e008277. doi: 10.1136/bmjopen-2015-008277 26391631

Článek vyšel v časopise


2019 Číslo 10