Abstract
BackgroundPatients 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.MethodsData 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.ResultsIn 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).ConclusionsRare 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.
Highlights
Cancer represents the second most common cause of death in Europe [1]
7343 participants were eligible for the analysis (i.e., 1856 adult patients with rare cancer (RC) and 5487 adult patients with CC) (Table 1)
The majority of patients with RC was diagnosed with hematological cancer (37%), female genital organs and breast cancer (15%), or cancer of the digestive tract (15%), while CC patients were mostly diagnosed with female genital organs and breast cancer (43%), male genital organ and urological cancer (19%), or cancer of the digestive tract (19%) (p < 0.001)
Summary
Cancer represents the second most common cause of death in Europe [1]. The International Agency for Research on Cancer estimated that there were 3.9 million new European cancer cases in 2018 [2]. Rare cancers pose specific challenges on our health care system, both in the diagnostic and treatment phase, and regarding access to clinical expertise [6, 7]. In their rare cancer trajectory, patients may be confronted with delayed or wrong diagnoses, conflicting treatment recommendations, logistical difficulties including coordination among multiple physicians and hospitals, and inadequate evidence to guide clinical decision-making [7,8,9,10]. 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
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