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

Abstract

Purpose Patients with a rare cancer face di culties 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. ResultsOf the 1,087 included patients, 106 (9.8%) had a rare cancer type. In comparison to patients with advanced common cancers, patients with advanced rare cancers experienced signi cantly 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.

Palliative Care Nursing Case Management in Young Adults With Advanced Rare Cancer

“…Nor did they address cancer in young adults, who are a population with specific needs that are reportedly unmet by the health service (LaRosa et al, 2017). Patients with advanced rare cancer often complain of lower continuity of care and social functioning compared with those with advanced common cancers, and no studies address the impact of the case manager as a liaison between different health care professionals to improve continuity of care in rare cancers (van Oss et al, 2023).…”