Supportive Care in Cancer

, Volume 26, Issue 10, pp 3397–3404 | Cite as

Health-related quality of life among cancer patients in their last year of life: results from the PROFILES registry

  • Natasja J. H. RaijmakersEmail author
  • M. Zijlstra
  • J. van Roij
  • O. Husson
  • S. Oerlemans
  • L. V. van de Poll-Franse
Original Article



The aim of this study was to assess health-related quality of life (HRQoL) in the last year of life of cancer patients stratified by four periods of time before death.

Patients and methods

Between 2008 and 2015, cancer patients were invited to participate in PROFILES (Patient Reported Outcomes Following Initial Treatment and Long-term Evaluation of Survivorship) registry studies. Patients were eligible for inclusion in this secondary analysis if they had been invited to complete the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30) in their last year of life (N = 892). Four hundred fifty-eight patients (51%) responded. Descriptive statistics were used to describe the HRQoL of cancer patients in the last 3 months of life (N = 61), the last 3–6 months (N = 110), the last 6–9 months (N = 138), or the last 9–12 months of their life (N = 129).


Patients in the last 3 months report a significant lower HRQoL, lower functioning, and higher symptom burden of fatigue and appetite loss compared to patients in different time periods before death (p < 0.008). Clinical relevance of the differences for global QoL, cognitive, and social functioning was large. Patients’ HRQoL in the last year of life was significantly lower than that of the normative population (p < 0.001).


All aspects of HRQoL are considerably impaired in patients with advanced cancer, with a marked lower HRQoL in the final months of life. This marked decline of HRQoL in the final months of life may be an indicator of approaching death and serve as an important trigger for end-of-life communication and decision-making about subsequent treatment and supportive care.


Quality of life Advanced cancer Palliative care Population-based cohort 


Funding information

The PROFILES registry was funded by an Investment Grant (no. 480-08-009) of the Netherlands Organization for Scientific Research (The Hague, The Netherlands). Dr. Olga Husson is supported by a Social Psychology Fellowship from the Dutch Cancer Society (no. KUN2015-7527). These funding agencies had no further role in conducting the study.

Compliance with ethical standards

Ethical approval was obtained for all study samples separately.

Conflict of interest

The authors have declare that they have no conflicts of interest.


  1. 1.
    Torre LA, Siegel RL, Ward EM, Jemal A (2016) Global cancer incidence and mortality rates and trends—an update. Cancer Epidemiol Biomark Prev 25:16–27CrossRefGoogle Scholar
  2. 2.
    Siegel RL, Miller KD, Jemal A (2015) Cancer statistics, 2015. CA Cancer J Clin 65:5–29CrossRefPubMedPubMedCentralGoogle Scholar
  3. 3.
  4. 4.
    Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA, Lynch TJ (2010) Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 363:733–742CrossRefPubMedGoogle Scholar
  5. 5.
    Kavalieratos D, Corbelli J, Zhang D, Dionne-Odom JN, Ernecoff NC, Hanmer J, Hoydich ZP, Ikejiani DZ, Klein-Fedyshin M, Zimmermann C, Morton SC, Arnold RM, Heller L, Schenker Y (2016) Association between palliative care and patient and caregiver outcomes: a systematic review and meta-analysis. JAMA 316:2104–2114CrossRefPubMedPubMedCentralGoogle Scholar
  6. 6.
    Lynn J, Adamson DM (2003) Living well at the end of life. Adapting health care to serious chronic illness in old age. RAND Health, Santa MonicaGoogle Scholar
  7. 7.
    Giesinger JM, Wintner LM, Oberguggenberger AS et al. (2011) Quality of life trajectory in patients with advanced cancer during the last year of life. J Palliat Med 14:904–912Google Scholar
  8. 8.
    Hwang SS, Chang VT, Fairclough DL et al. (2003) Longitudinal quality of life in advanced cancer patients: pilot study results from a VA medical cancer center. J Pain Symptom Manag 25:225–235Google Scholar
  9. 9.
    Elmqvist MA, Jordhoy MS, Bjordal K et al (2009) Health-related quality of life during the last three months of life in patients with advanced cancer. Support Care Cancer 17:191–198CrossRefPubMedGoogle Scholar
  10. 10. NCR: Netherlands cancer registration. Last accessed on November 2017
  11. 11.
    van de Poll-Franse LV, Horevoorts N, van Eenbergen M et al (2011) The Patient Reported Outcomes Following Initial treatment and Long term Evaluation of Survivorship registry: scope, rationale and design of an infrastructure for the study of physical and psychosocial outcomes in cancer survivorship cohorts. Eur J Cancer 47:2188–2194CrossRefPubMedGoogle Scholar
  12. 12. The PROFILES Registry. Last accessed on November 2017
  13. 13.
    van Duijn C, Keij I (2002) Sociaal-economische status indicator op postcode niveau. Maandstatistiek van de Bevolking 50:32–35 Google Scholar
  14. 14.
    Fritz A PC, Jack A, Shanmugaratnam K, Sobin L, Parkin DM, Whelan S (2013) International classification of diseases for oncology first revision. WHO Library Cataloguing-in-Publication DataGoogle Scholar
  15. 15.
    Sobin LH, Fleming ID (1997) TNM classification of malignant tumors, fifth edition (1997). Union Internationale Contre le Cancer and the American joint committee on Cancer. Cancer 80:1803–1804CrossRefPubMedGoogle Scholar
  16. 16.
    Sangha O, Stucki G, Liang MH, Fossel AH, Katz JN (2003) The self-administered comorbidity questionnaire: a new method to assess comorbidity for clinical and health services research. Arthritis Rheum 49:156–163CrossRefPubMedGoogle Scholar
  17. 17.
    Niezgoda HE, Pater JL (1993) A validation study of the domains of the core EORTC quality of life questionnaire. Qual Life Res 2:319–325CrossRefPubMedGoogle Scholar
  18. 18.
    Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, Filiberti A, Flechtner H, Fleishman SB, Haes JCJM, Kaasa S, Klee M, Osoba D, Razavi D, Rofe PB, Schraub S, Sneeuw K, Sullivan M, Takeda F (1993) 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 85:365–376CrossRefPubMedGoogle Scholar
  19. 19.
    Fayers PM, Aaronson NK, Bjordal K, Groenvold M, Curran D, Bottomley A, on behalf of the EORTC Quality of Life Group (2001) The EORTC QLQ-C30 scoring manual (3rd edition). In. Brussels. 2-930064-22-6Google Scholar
  20. 20.
    Nordin K, Steel J, Hoffman K, Glimelius B (2001) Alternative methods of interpreting quality of life data in advanced gastrointestinal cancer patients. Br J Cancer 85:1265–1272CrossRefPubMedPubMedCentralGoogle Scholar
  21. 21.
    Giesinger JM, Kieffer JM, Fayers PM et al. (2016) Replication and validation of higher order models demonstrated that a summary score for the EORTC QLQ-C30 is robust. J Clin Epidemiol 69:79–88Google Scholar
  22. 22. Centerpanel. Last accessed on November 2017
  23. 23.
    Cocks K, King MT, Velikova G, Martyn St-James M, Fayers PM, Brown JM (2011) Evidence-based guidelines for determination of sample size and interpretation of the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30. J Clin Oncol 29:89–96CrossRefPubMedGoogle Scholar
  24. 24.
    Husson O, Thong MS, Mols F et al (2013) Information provision and patient reported outcomes in patients with metastasized colorectal cancer: results from the PROFILES registry. J Palliat Med 16:281–288CrossRefPubMedPubMedCentralGoogle Scholar
  25. 25.
    Horevoorts NJ, Vissers PA, Mols F et al (2015) Response rates for patient-reported outcomes using web-based versus paper questionnaires: comparison of two invitational methods in older colorectal cancer patients. J Med Internet Res 17:e111CrossRefPubMedPubMedCentralGoogle Scholar
  26. 26.
    Nicolaije KA, Ezendam NP, Pijnenborg JM et al (2016) Paper-based survivorship care plans may be less helpful for cancer patients who search for disease-related information on the internet: results of the Registration System Oncological Gynecology (ROGY) Care Randomized trial. J Med Internet Res 18:e162CrossRefPubMedPubMedCentralGoogle Scholar
  27. 27.
    Etkind SN, Daveson BA, Kwok W, Witt J, Bausewein C, Higginson IJ, Murtagh FEM (2015) Capture, transfer, and feedback of patient-centered outcomes data in palliative care populations: does it make a difference? A systematic review. J Pain Symptom Manag 49:611–624CrossRefGoogle Scholar
  28. 28.
    Basch E, Deal AM, Kris MG, Scher HI, Hudis CA, Sabbatini P, Rogak L, Bennett AV, Dueck AC, Atkinson TM, Chou JF, Dulko D, Sit L, Barz A, Novotny P, Fruscione M, Sloan JA, Schrag D (2016) Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Oncol 34:557–565CrossRefPubMedGoogle Scholar
  29. 29.
    van Roij J FH, Van de Poll-Franse LV, Zijlstra M, Raijmakers NJH. Measuring quality of life in patient with advanced cancer: a systematic review of self-administered instruments. Quality of Life Research.
  30. 30.
    Groenvold M, Petersen MA, Aaronson NK, Arraras JI, Blazeby JM, Bottomley A, Fayers PM, de Graeff A, Hammerlid E, Kaasa S, Sprangers MA, Bjorner JB, EORTC Quality of Life Group (2006) The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care. Eur J Cancer 42:55–64CrossRefPubMedGoogle Scholar
  31. 31.
    Granek L, Krzyzanowska MK, Tozer R, Mazzotta P (2013) Oncologists’ strategies and barriers to effective communication about the end of life. J Oncol Pract 9:e129–e135CrossRefPubMedPubMedCentralGoogle Scholar
  32. 32.
    Baile WF, Lenzi R, Parker PA, Buckman R, Cohen L (2002) Oncologists’ attitudes toward and practices in giving bad news: an exploratory study. J Clin Oncol 20:2189–2196CrossRefPubMedGoogle Scholar
  33. 33.
    Wintner LM, Sztankay M, Aaronson N, Bottomley A, Giesinger JM, Groenvold M, Petersen MA, van de Poll-Franse L, Velikova G, Verdonck-de Leeuw I, Holzner B, EORTC Quality of Life Group (2016) The use of EORTC measures in daily clinical practice—a synopsis of a newly developed manual. Eur J Cancer 68:73–81CrossRefPubMedGoogle Scholar
  34. 34.
    Stover AM, Basch EM (2017) The potential role of symptom questionnaires in palliative and supportive cancer care delivery. Curr Oncol Rep 19:12CrossRefPubMedPubMedCentralGoogle Scholar

Copyright information

© Springer-Verlag GmbH Germany, part of Springer Nature 2018

Authors and Affiliations

  1. 1.The Netherlands Comprehensive Cancer Organisation (IKNL)UtrechtThe Netherlands
  2. 2.Department of Medical OncologyRadboud MCNijmegenThe Netherlands
  3. 3.Department of Medical PsychologyRadboud University MCNijmegenThe Netherlands
  4. 4.Institute of Cancer Research and Royal Marsden NHS Foundation TrustLondonUK
  5. 5.CoRPS—Center of Research on Psychology in Somatic diseases, Department of Medical and Clinical PsychologyTilburg UniversityTilburgThe Netherlands
  6. 6.Division of Psychosocial Research and EpidemiologyThe Netherlands Cancer InstituteAmsterdamThe Netherlands

Personalised recommendations