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Quality of life of patients with rare cancer: a comparison with patients with colorectal cancer and the association with disease trajectory-related factors

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Abstract

Purpose

Differences in quality of life (QoL) between patients with rare and common cancer might be explained by the specific challenges patients with rare cancer face during their disease trajectory, but research is scarce. This study aimed to (1) assess the difference in QoL between patients with rare and common cancer (i.e. colorectal cancer (CRC)) and (2) examine the association between disease trajectory-related factors and QoL in patients with rare cancer.

Methods

Cross-sectional data were collected among adults with rare cancer by a nationwide online survey in the Netherlands. For comparison with patients with CRC, data from the Prospective Dutch Colorectal Cancer (PLCRC) cohort were used. Associations were assessed by linear regression analyses.

Results

Data from 1525 patients with rare cancer and 1047 patients with CRC were analysed. Having a rare cancer was significantly associated with a lower QoL compared to having CRC (p < 0.001). Disease trajectory-related factors significantly associated with QoL in patients with rare cancer were time until diagnosis, misdiagnoses, information on best treatment options, information on late and/or long-term effects, and both satisfaction with physician and specialized nurse care (all: p < 0.05).

Conclusion

Patients with rare cancers have a lower self-reported QoL than patients with CRC, and several disease trajectory-related factors are associated with QoL in patients with rare cancer.

Implications for Cancer Survivors

To improve QoL of patients with rare cancer, appropriate guidance and support by healthcare professionals throughout the disease trajectory are needed, as well as early diagnosis and proper referral to centres of expertise.

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Data availability

The data that support the finding of this study are available from NFK, the PLCRC cohort, and the NCR. Restrictions apply to the availability of these data, which were used under license for this study. Data are available with the permission of NFK, the PLCRC cohort and/or the NCR.

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Acknowledgements

The authors are grateful to all patients with rare cancer who participated in this study by completing the survey and all patients with CRC who participated in the PLCRC cohort. The authors thank the registration team of Netherlands Comprehensive Cancer Organisation (IKNL) for the collection of data for the Netherlands Cancer Registry and investigators of the Prospective Dutch ColoRectal Cancer cohort for the collection of data.

Author information

Authors and Affiliations

  1. Department of Research and Development, Netherlands Comprehensive Cancer Organisation (Integraal Kankercentrum Nederland, IKNL), Godebaldkwartier 419, 3511 DT, Utrecht, The Netherlands

    Esmee Driehuis, Eline de Heus, Geraldine R. Vink & Saskia F. A. Duijts

  2. Department of Medical Oncology, Radboud University Medical Center, Geert Grooteplein Zuid 10, 6525 GA, Nijmegen, The Netherlands

    Eline de Heus

  3. Dutch Federation of Cancer Patients Organizations, Nederlandse Federatie Van Kankerpatiëntenorganisaties, NFK), Godebaldkwartier 365, 3611 DT, Utrecht, The Netherlands

    Marga Schrieks & Vivian Engelen

  4. Department of Medical Oncology, Amsterdam University Medical Centers (Location VUmc), De Boelelaan 1117, 1081 HV, Amsterdam, The Netherlands

    Tineke E. Buffart

  5. Department of Medical Oncology, University Medical Center Utrecht, Utrecht University, Heidelberglaan 100, 3584 CX, Utrecht, The Netherlands

    Geraldine R. Vink

  6. Department of Medical Psychology, Amsterdam University Medical Centers (Location VUmc), De Boelelaan 1117, 1081 HV, Amsterdam, The Netherlands

    Saskia F. A. Duijts

  7. Cancer Center Amsterdam, Cancer Treatment and Quality of Life, De Boelelaan 1118, 1081 HV, Amsterdam, The Netherlands

    Saskia F. A. Duijts

Authors
  1. Esmee Driehuis
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  2. Eline de Heus
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  4. Vivian Engelen
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Contributions

All authors have made substantial contributions to conception and design, or collection of data, or analysis and interpretation of data. The first draft of the manuscript was written by Esmee Driehuis, and all authors commented on previous versions of the manuscript. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Saskia F. A. Duijts.

Ethics declarations

Ethics approval

The medical ethical committee of the VU University Medical Centre issued the Medical Research Involving Human Subjects act (WMO) not applicable for the rare cancer questionnaire. As a result, no ethical approval was required (2021.0722). All procedures performed were in accordance with the 1964 Helsinki declaration, its amendments and comparable ethical standards.

PLCRC was registered at Clinicaltrials.gov (NCT02070146), and approved by the Medical Research Ethics Committee of the University Medical Centre Utrecht (NL47888.041.14).

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Informed consent was obtained from all individual participants included in the study.

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The authors declare no competing interests.

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Driehuis, E., de Heus, E., Schrieks, M. et al. Quality of life of patients with rare cancer: a comparison with patients with colorectal cancer and the association with disease trajectory-related factors. J Cancer Surviv 17, 986–996 (2023). https://doi.org/10.1007/s11764-022-01324-7

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