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

Anouk van Oss, Saskia F. A. Duijts, Hanneke van Laarhoven, Evelien Kuip, Natasja J. H. Raijmakers, Linda Brom

Research output: Contribution to journalArticleAcademicpeer-review


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.
Original languageEnglish
Pages (from-to)997-1007
Number of pages11
JournalJournal of Cancer Survivorship
Issue number4
Early online date2023
Publication statusPublished - Aug 2023


  • Advanced cancer
  • Continuity of care
  • Palliative care
  • Quality of care
  • Quality of life
  • Rare cancer

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