How Cancer Patients Perceive Clinical Trials (CTs) in the Era of CTs: Current Perception and Its Differences Between Common and Rare Cancers

Abstract

Background: As perception have been recently highlighted as critical determinants of clinical trials (CTs) in cancer patients, we evaluated current perceptional status of CTs in cancer patients, focusing on differences between common and rare cancers. Materials & Methods:From November 2015 to May 2017, we prospectively surveyed patients who have received anti-cancer treatment at Asan Medical Center using the PARTAKE questionnaires.Results: Among 333 respondents, 70.9% and 29.1% had common and rare cancers, respectively. While 87.7% and 75.3% of patients answered that they heard of and knew about CTs, willingness to participate in CTs was expressed only in approximately 56% of patients although willingness was significantly correlated with awareness and perception. Surprisingly, patients with rare cancers showed significantly lower levels of awareness and perception (64.2% vs 79.9%, p=0.003 and 77.3% vs 91.9%, p<0.001), and consequently less willingness (47.4% vs 58.9%, p=0.06) compared to patients with common cancers. In addition, cancer patients still harbored fear with concerns about safety and reward, and substantial ignorance and mistrust about voluntariness of CTs, which was more predominant in patients with rare cancers.Conclusions: Present study identified relatively less willingness of CTs in cancer patients compared with generally favorable perception, and highlighted relative perceptional poverty in patients with rare cancers than those with common cancers. Further education and encouragement by research and public entities seem essential to raise motivation of CTs in cancer patients beyond good perception, especially for the patients with rare cancers.

Associations between geography, decision‐making style, and interest in cancer clinical trial participation

“…25 Psychosocial barriers to trial participation may also exist. Park and colleagues 26 found patients receiving treatment for both common and rare cancers expressed fear, safety concerns, and lacked knowledge surrounding clinical trial benefits. Kotowski et al 27 investigated how patient willingness to participate in clinical trials relates to their familiarity with trials.…”

Improving Diagnosis and Care for Patients With Sarcoma: Do Real-World General Practitioners Data and Prospective Data Collections Have a Place Next to Clinical Trials?

“…7 This is certainly the case for rare cancers such as sarcomas, where patient numbers are so small that it is challenging to conduct a RCT within a realistic timeframe with a manageable number of collaborators and statistical power (Table 1). [10][11][12] Furthermore, as our knowledge of biologic diversity within histologic subtypes of sarcomas advances, there is a trend toward more studies concentrating on molecular targets, increasing RCT complexity. 13 Current guidelines recommend multidisciplinary care at specialized centers, for localized tumors often requiring extensive surgical excision and (neo)adjuvant radiotherapy (RT) for high-risk patients.…”

Rapid systematic review of clinical trials on pharmacological therapies for rare gynecological cancers

“…Addressing the under-representation of such groups and promoting inclusion is important to have more accurate and representative outcomes and expand access to new cancer treatments. Moreover, one recent study found that patients with rare cancers are significantly less willing to participate in clinical trials compared to patients with common cancers (17). Despite the challenges, clinical trials on common and rare gynecological cancers have advanced in investigating targeted therapies including antiangiogenic agents, PARP inhibitors, tumor-intrinsic signaling pathway inhibitors, selective estrogen receptor down-regulators, and immune checkpoint inhibitors.…”