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Perception of prognosis and health-related quality of life in patients with advanced cancer: results of a multicentre observational study (eQuiPe)

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Abstract

Purpose

To assess perception of prognosis in patients with advanced cancer, its association with patient’s characteristics and health-related quality of life (HRQoL).

Methods

In a multicentre observational cohort study (eQuiPe), conducted on patients with advanced cancer, perceived prognosis, coping strategies, and HRQoL were assessed. Clinical data were obtained from the Netherlands Cancer Registry. Patients with vs. without a perception of prognosis, patients who perceived their prognosis as limited (< 1 year) vs. longer (> 1 year), and patients who did not want to know their prognosis vs. those who did not know for other reasons were compared.

Results

Of 1000 patients with advanced cancer, 29% perceived their prognosis as > 1 year, 13% < 1 year, and 4% non-life threatening. Thirty-six percent did not know their prognosis and another 15% did not want to know. Patients without a perception were older, lower educated, coped differently (less accepting, planning, active; more denial), and received treatment more often (p < 0.05). Global QoL was lower in patients with vs. without a perceived prognosis (66 (SD21) vs. 69 (SD19), p = 0.01), specifically in patients who perceived a limited rather than a longer prognosis (57 (SD22) vs. 70 (SD19), p < 0.01). Global QoL of patients who did not want to know their prognosis was comparable to patients who did not know for other reasons (71 (SD19) vs. 69 (SD19), p = 0.22).

Conclusion

More than half of the patients with advanced cancer have no perception of their prognosis. Patients with a perceived prognosis have lower HRQoL, but only in patients who perceived their prognosis as limited (< 1 year) and were probably closer to the end of life, which more likely determines their poorer HRQoL, rather than prognostic perception. Ignorance of prognosis is not associated with lower HRQoL, however, should not hamper appropriate palliative care.

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Data Availability

Since 2011, PROFILES registry data is freely available according to the FAIR (Findable, Accessible, Interoperable, Reusable) data principles for non-commercial (international) scientific research, subject only to privacy and confidentiality restrictions. The datasets analysed during the current study are available through Questacy (DDI 3.x XML) and can be accessed by our website(www.profilesregistry.nl). In order to arrange optimal long-term data warehousing and dissemination, we follow the quality guidelines that are formulated in the ‘Data Seal of Approval’(www.datasealofapproval.org) document, developed by Data Archiving and Networked Services (DANS). The data reported in this manuscript will be made available when the eQuiPe study is completed.

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Acknowledgements

We thank all patients for their time and effort in participating in our study while being in an uncertain situation. We also want to thank the participating hospitals for recruiting and informing patients about the eQuiPe study. Finally, we would like to thank all research assistants from PROFILES for all their efforts concerning the data collection of the eQuiPe study.

Author information

Authors and Affiliations

  1. Department of Research and Development, Netherlands Comprehensive Cancer Organisation (IKNL), PO box 19079, 3501 DB, Utrecht, The Netherlands

    Myrte Zijlstra, J. van Roij, L. V. van de Poll-Franse & N. J. H. Raijmakers

  2. Department of Internal Medicine, St. Jans Gasthuis, Weert, The Netherlands

    Myrte Zijlstra

  3. Netherlands Association for Palliative Care (PZNL), Utrecht, The Netherlands

    Myrte Zijlstra, J. van Roij & N. J. H. Raijmakers

  4. Department of Medical Psychology, Amsterdam University Medical Center, University of Amsterdam, Amsterdam, The Netherlands

    I. Henselmans

  5. Department of Medical Oncology, Cancer Center Amsterdam, Amsterdam UMC, University of Amsterdam, Amsterdam, The Netherlands

    H. W. M. van Laarhoven

  6. Department of Medical Oncology, Catharina Hospital, Eindhoven, The Netherlands

    G. J. Creemers

  7. Department of Medical Oncology, Maxima Medical Centre, Veldhoven, The Netherlands

    G. Vreugdenhil

  8. Department of Medical Oncology, Radboud University Medical Center, Nijmegen, The Netherlands

    E. J. M. Kuip

  9. Department of Anesthesiology, Pain and Palliative Care, Radboud University Medical Center, Nijmegen, The Netherlands

    E. J. M. Kuip

  10. CoRPS - Center of Research On Psychology in Somatic Diseases, Department of Medical and Clinical Psychology, Tilburg University, Tilburg, The Netherlands

    L. V. van de Poll-Franse

  11. Division of Psychosocial Research and Epidemiology, The Netherlands Cancer Institute, Amsterdam, The Netherlands

    L. V. van de Poll-Franse

Authors
  1. Myrte Zijlstra
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Consortia

on behalf of the eQuiPe study group

Contributions

Authors MZ, JvR, LvP, and NR contributed to the study conception and design. Data analysis was performed by MZ and NR. The first draft of the manuscript was written by MZ and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Myrte Zijlstra.

Ethics declarations

Ethical approval

The study is conducted according to the declaration of Helsinki. The study protocol has been reviewed by the Medical Ethical Committee of the Dutch Cancer Institute (NKI) in Amsterdam, the Netherlands (METC16.2050). The METC has exempted this observational research from ethical review, accordingly to the Dutch Medical Research Involving Human Subjects Act (WMO).

Consent to participate

Informed consent was obtained from all participants. With regard to data collection and analysis procedures, the Dutch Personal Data Protection Act was followed.

Competing interests

The authors declare no competing interests.

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Zijlstra, M., van Roij, J., Henselmans, I. et al. Perception of prognosis and health-related quality of life in patients with advanced cancer: results of a multicentre observational study (eQuiPe). Support Care Cancer 31, 165 (2023). https://doi.org/10.1007/s00520-023-07631-8

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