罕见癌与常见癌患者医疗体验的差异：一项全国性横断面调查的结果。
Differences in health care experiences between rare cancer and common cancer patients: results from a national cross-sectional survey.
机构信息
Department of Research and Development, Netherlands Comprehensive Cancer Organisation (IKNL), Godebaldkwartier 419, 3511 DT, Utrecht, The Netherlands.
Department of Medical Oncology, Radboud University Medical Center, Nijmegen, The Netherlands.
出版信息
Orphanet J Rare Dis. 2021 Jun 1;16(1):249. doi: 10.1186/s13023-021-01886-2.
BACKGROUND
Patients with rare cancers face challenges in the diagnostic and treatment phase, and in access to clinical expertise. Since studies on health care experiences of these patients in comparison to patients with more common cancers are scarce, we aimed to explore these differences.
METHODS
Data were cross-sectionally collected among (former) adult cancer patients through a national online survey in the Netherlands (October 2019). Descriptive statistics were reported and subgroups (rare vs. common patients) were compared.
RESULTS
In total, 7343 patients (i.e., 1856 rare and 5487 common cancer patients) participated. Rare cancer patients were more often diagnosed and treated in different hospitals compared to common cancer patients (67% vs. 59%, p < 0.001). Rare cancer patients received treatment more often in a single hospital (60% vs. 57%, p = 0.014), but reported more negative experiences when treated in multiple hospitals than common cancer patients (14% vs. 9%, p < 0.001). They also more often received advise from their physician about the hospital to go to for a second opinion (50% vs. 36%, p < 0.001), were more likely to choose a hospital specialized in their cancer type (33% vs. 22%, p < 0.001), and were more willing to travel as long as necessary to receive specialized care than common cancer patients (55% vs. 47%, p < 0.001).
CONCLUSIONS
Rare and common cancer patients differ in their health care experiences. Health care for rare cancer patients can be further improved by proper referral to centers of expertise and building a clinical network specifically for rare cancers.
背景
患有罕见癌症的患者在诊断和治疗阶段以及获得临床专业知识方面面临挑战。由于针对这些患者的医疗保健体验与更常见癌症患者的研究很少，因此我们旨在探讨这些差异。
方法
通过在荷兰进行的全国在线调查，在 2019 年 10 月从（前）成年癌症患者中收集了横断面数据。报告了描述性统计数据，并比较了亚组（罕见与常见癌症患者）。
结果
共有 7343 名患者（即 1856 名罕见癌症患者和 5487 名常见癌症患者）参与了该研究。与常见癌症患者相比，罕见癌症患者更经常在不同的医院接受诊断和治疗（67%比 59%，p<0.001）。罕见癌症患者更经常在一家医院接受治疗（60%比 57%，p=0.014），但在多家医院接受治疗时报告的负面体验比常见癌症患者多（14%比 9%，p<0.001）。他们也更经常从医生那里获得有关去第二意见的医院的建议（50%比 36%，p<0.001），更有可能选择专门治疗其癌症类型的医院（33%比 22%，p<0.001），并且愿意为了接受专业护理而尽可能多地旅行，这比常见癌症患者更愿意（55%比 47%，p<0.001）。
结论
罕见癌症和常见癌症患者在医疗保健体验方面存在差异。通过适当转诊至专业中心，并为罕见癌症建立专门的临床网络，可以进一步改善罕见癌症患者的医疗保健。
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