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Quality of care and quality of life as experienced by patients with advanced cancer of a rare tumour type: results of the multicentre observational eQuiPe study

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Abstract

Purpose

Patients with a rare cancer face difficulties during their disease trajectory, such as delayed diagnosis and lack of expert care. However, little is known about their perceived quality of care (QoC) and quality of life (QoL) in the advanced disease stage. We aimed to assess the QoC and QoL as experienced by patients with advanced rare cancers compared to patients with advanced common cancers.

Methods

In this cross-sectional study, baseline data of patients with advanced cancer from the multicentre, longitudinal, observational eQuipe study were analysed. Multivariable linear regression analyses were conducted to assess differences in experienced QoC (continuity of care, continuity of information, and satisfaction with care) and QoL (functioning, symptoms, overall QoL, and social wellbeing) between advanced rare and common cancer patients.

Results

Of the 1087 included patients, 106 (9.8%) had a rare cancer type. In comparison to patients with advanced common cancers, patients with advanced rare cancers experienced significantly lower continuity of care (77.8 vs. 71.1 respectively, p = 0.011) and social functioning (78.8 vs. 72.6 respectively, p = 0.012). No differences were found regarding continuity of information, satisfaction with care, overall QoL, and social wellbeing.

Conclusions

Patients with advanced rare cancers experience less continuity of care, and the impact of the disease on social and family life seems higher compared to patients with advanced common cancers.

Implications for Cancer Survivors

To enhance the QoC and QoL of patients with advanced rare cancers, supportive care should mainly focus on improving continuity of care and patients’ social functioning.

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Acknowledgements

We thank all participating hospitals and healthcare professionals for their effort and support regarding this study. Moreover, we thank all participating patients for completing the questionnaires and sharing their experiences in the last phase of their lives.

Funding

The eQuiPe study is funded by the Roparun Foundation.

Author information

Authors and Affiliations

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

    Anouk van Oss, Saskia F. A. Duijts, Natasja J. H. Raijmakers & Linda Brom

  2. Department of Medical Psychology, Amsterdam UMC Location Vrije Universiteit, Amsterdam, De Boelelaan 1117, Amsterdam, the Netherlands

    Saskia F. A. Duijts

  3. Cancer Center Amsterdam, Cancer Treatment and Quality of Life, Amsterdam, the Netherlands

    Saskia F. A. Duijts & Hanneke van Laarhoven

  4. Department of Medical Oncology, Amsterdam University Medical Centers, Cancer Center Amsterdam, University of Amsterdam, Amsterdam, the Netherlands

    Hanneke van Laarhoven

  5. Department of Medical Oncology and Department of Anesthesiology, Pain and Palliative Care, Radboud University Medical Center, Nijmegen, the Netherlands

    Evelien Kuip

  6. Netherlands Association for Palliative Care (PZNL), Utrecht, the Netherlands

    Natasja J. H. Raijmakers & Linda Brom

Authors
  1. Anouk van Oss
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  2. Saskia F. A. Duijts
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  3. Hanneke van Laarhoven
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  5. Natasja J. H. Raijmakers
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  6. Linda Brom
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Contributions

Anouk van Oss: Conceptualisation, data curation, methodology, statistical analysis, interpretation, writing (original draft). Linda Brom: Conceptualisation, methodology, interpretation, writing (review and editing). Saskia F.A. Duijts: Conceptualisation, methodology, interpretation, writing (review and editing). Natasja JH Raijmakers: Methodology, interpretation, writing (review and editing). Hanneke van Laarhoven: Writing (review and editing). Evelien Kuip: Writing (review and editing).

Corresponding author

Correspondence to Linda Brom.

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Ethics approval

The eQuiPe study protocol has been reviewed by the Medical Ethical Committee (METC) of the Netherlands Cancer Institute (NKI) in Amsterdam, the Netherlands (METC17.1491). The METC has exempted this observational research from full ethical review, according to the Dutch Medical Research Involving Human Subjects Act (WMO). Informed consent was obtained from all the participating patients.

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

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Written 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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van Oss, A., Duijts, S.F.A., van Laarhoven, H. et al. Quality of care and quality of life as experienced by patients with advanced cancer of a rare tumour type: results of the multicentre observational eQuiPe study. J Cancer Surviv 17, 997–1007 (2023). https://doi.org/10.1007/s11764-022-01323-8

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