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

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Abstract

Perception has recently been highlighted as a critical determinant for participation in clinical trials (CTs) among cancer patients. We evaluated cancer patients’ current perceptions of CTs using the PARTAKE questionnaires, focusing on differences between patients with common and rare cancers. From November 2015 to May 2017, we prospectively surveyed patients who had received anti-cancer treatment at Asan Medical Center. Among 333 respondents, 70.9% had common and 29.1% had rare cancers. In the cohort, 87.7% of patients with common cancers and 75.3% of patients with rare cancers answered that they heard of and knew about CTs. However, willingness to participate in CTs was expressed only in approximately 56% of patients, although it was significantly associated with awareness and perception. Surprisingly, patients with rare cancers when compared with patients with common 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 to participate in CTs (47.4% vs 58.9%, p = 0.06). In addition, cancer patients still harbored fear and concerns about safety and reward of CTs, and demonstrated substantial lack of knowledge about the voluntary nature of CTs, which was more obvious in patients with rare cancers. We identified relatively modest willingness of cancer patients to participate in CTs regardless of generally favorable perception. These findings are highlighted by the more negative perception of CTs among patients with rare cancers relative to those with common cancers. Further education and encouragement by research and public entities seem essential to improve motivation of CTs in cancer patients beyond good perception, especially for patients with rare cancers.

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Acknowledgments

The current research was supported by two grants from the Korea Health Technology R&D Project of the Korea Health Industry Development Institute (KHIDI), funded by the Ministry of Health & Welfare, Republic of Korea (grant number: HI14C1061, HI18C2383).

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Authors and Affiliations

  1. Departments of Oncology, Asan Medical Center, University of Ulsan College of Medicine, 88 Olympic-ro 43-gil, Songpa-gu, Seoul, 05505, South Korea

    Ji Hyun Park, Jeong Eun Kim, Jin-Hee Ahn, Min-Hee Ryu, Sook-ryun Park, Shin-kyo Yoon, Jae Cheol Lee, Yong-Sang Hong, Sun Young Kim, Kyo-Pyo Kim, Chang-Hoon Yoo, Jung Yong Hong, Jae Lyun Lee, Kyung Hae Jung, Baek-Yeol Rhyoo & Tae Won Kim

  2. Department of Hemato-oncology, Konkuk Medical Center, University of Konkuk College of Medicine, Seoul, South Korea

    Ji Hyun Park

  3. Clinical Research Center, Asan Institute of Life Sciences, Asan Medical Center, Seoul, South Korea

    Ji Sung Lee & HaYeong Koo

  4. Korea Clinical Trials Global Initiative, Seoul, South Korea

    HaYeong Koo

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  1. Ji Hyun Park
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  18. Tae Won Kim
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Contributions

JHP reviewed the literature, prepared and designed the analysis of data, and drafted and revised the manuscript. JSL, out statistician, made substantial contributions to the methodological process with the whole statistical analysis presented in the study. HYK made a core assistance in directing and proceeding PARTAKE survey and contributed to data management. All other listed co-authors contributed to enrollment of patients for they, as physician oncologist and co-investigators, primarily introduced the scope and aim of the current survey to their patients. TWK initially inspired the conception and design of the study and finally gave final approval of the version to be published. All authors read and approved the final manuscript.

Corresponding author

Correspondence to Tae Won Kim.

Ethics declarations

The study protocol was reviewed and approved by the Institutional Review Board (IRB approval number: 2014-1061) of Asan Medical Center and was conducted in full accordance with the guidelines for Good Clinical Practice and the Declaration of Helsinki.

Conflict of Interest

The authors declare that they have no conflict of interest.

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Park, J.H., Lee, J.S., Koo, H. et al. How Cancer Patients Perceive Clinical Trials (CTs) in the Era of CTs: Current Perception and Its Differences Between Common and Rare Cancers. J Canc Educ 35, 545–556 (2020). https://doi.org/10.1007/s13187-019-01494-6

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