Department of Research & Development, Netherlands Comprehensive Cancer Organisation (IKNL), PO box, 19079, 3501 DB, Utrecht, the Netherlands.
Department of Medical Psychology, Amsterdam UMC Location Vrije Universiteit, Amsterdam, De Boelelaan 1117, Amsterdam, the Netherlands.
J Cancer Surviv. 2023 Aug;17(4):997-1007. doi: 10.1007/s11764-022-01323-8. Epub 2023 Jan 3.
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.
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.
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.
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.
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.
患有罕见癌症的患者在疾病进程中面临困难，例如诊断延迟和缺乏专家护理。然而，人们对晚期罕见癌症患者的护理质量（QoC）和生活质量（QoL）知之甚少。我们旨在评估晚期罕见癌症患者与晚期常见癌症患者相比的 QoC 和 QoL。
在这项横断面研究中，分析了多中心、纵向、观察性 eQuipe 研究中晚期癌症患者的基线数据。进行多变量线性回归分析，以评估晚期罕见和常见癌症患者在体验 QoC（护理连续性、信息连续性和护理满意度）和 QoL（功能、症状、总体 QoL 和社会幸福感）方面的差异。
在纳入的 1087 名患者中，有 106 名（9.8%）患有罕见癌症类型。与晚期常见癌症患者相比，晚期罕见癌症患者的护理连续性明显较低（分别为 77.8%和 71.1%，p=0.011），社会功能也较低（分别为 78.8%和 72.6%，p=0.012）。在信息连续性、护理满意度、总体 QoL 和社会幸福感方面，差异无统计学意义。
晚期罕见癌症患者的护理连续性较低，与晚期常见癌症患者相比，疾病对社会和家庭生活的影响似乎更高。
为了提高晚期罕见癌症患者的 QoC 和 QoL，支持性护理应主要侧重于提高护理连续性和患者的社会功能。
