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.
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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).
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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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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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DOI: https://doi.org/10.1007/s11764-022-01323-8