Awareness and perceptions of clinical trials in patients with cancer and their families in Turkey.

person Pinar Kubilay Ankara University Faculty of Medicine, Medical Oncology Department, Ankara, Turkey info_outline Pinar Kubilay, Cihan Erol, Seda Kahraman, Seher Yildiz Tacar, Erkan Özcan, Fatma Bugdayci Basal, Fatih Köse, Mehmet Ali Nahit Sendur, Deniz Tural, Irfan Cicin, Berna Oksuzoglu, Yüksel Ürün

Authors person Pinar Kubilay Ankara University Faculty of Medicine, Medical Oncology Department, Ankara, Turkey info_outline Pinar Kubilay, Cihan Erol, Seda Kahraman, Seher Yildiz Tacar, Erkan Özcan, Fatma Bugdayci Basal, Fatih Köse, Mehmet Ali Nahit Sendur, Deniz Tural, Irfan Cicin, Berna Oksuzoglu, Yüksel Ürün Organizations Ankara University Faculty of Medicine, Medical Oncology Department, Ankara, Turkey, Ankara Yıldırım Beyazıt University Faculty of Medicine Department of Medical Oncology, Ankara, Turkey, Bakirköy Dr. Sadi Konuk Training and Research Hospital Department of Medical Oncology, Istanbul, Turkey, Trakya University School of Medicine Department of Medical Oncology, Edirne, Turkey, Department of Medical Oncology, University of Health Sciences, Dr Abdurrahman Yurtaslan Ankara Oncology Training and Research Hospital, Ankara, Turkey, Baskent University, Kazımkarabekir, Turkey, Bakirkoy Dr. Sadi Konuk Teaching and Research Hospital, Istanbul, Turkey, Department of Medical Oncology, Trakya University, Edirne, Turkey, University of Health Sciences Dr. Abdurrahman Yurtaslan Ankara Oncology Education and Research Hospital, Medical Oncology Department, Ankara, Turkey Abstract Disclosures Research Funding No funding received None. Background: Patient preference plays an important role in enrolling in clinical trials. We conducted this study to understand the perceptions knowledge and willingness of cancer patients or their families about clinical trials. Methods: A questionnaire in Turkish language was conducted including the sociodemographic characteristics of the participants and the factors that may affect their decision to participate in clinical trials. The study was carried out in 5 tertiary health care institutions with clinical research centers in Turkey. Adult patients diagnosed with solid tumors or their family members who agreed to participate were surveyed by medical doctors. Participants were interviewed between January 2020 and April 2021. Comparisons between groups were carried out using chi-square test χ2 for the categorical variables. IBM SPSS25 was used in analyses and p<0.05 was accepted as the level of significance. Results: A total of 978 patients whose age ranged 18 and 82 (Mean= 51.43, SD=14.41) participated in the study. %50.3 was male, %40.7 was female. Willingness to participate a clinical trial was positively corelated with participants self reported health condition is excellent or good (p=0.206), well knowledge about clinical trials (p<0.001), high school or higher education level (p<0.001), household income above poverty level (p=0.003), previously received systemic cancer treatment of himself or family member or friend (p=0.03). %73.7 stated they are more willing to participate if their oncology specialist conducting the clinical trial. %84.3 want to get information about the clinical trial from their oncology specialist. %72.5 stated that positive experiences of a previous clinical trial participant will affect their decision making. Top corcerns about clinical trials are possible treatment side effects (%56.7), being treated as a test subject (%29), risk of placebo (%20.1). Top motivations are accessing best doctors (%45.8), accessing newest and best treatment options (%40.7), getting more information about their health condition (%68.9), helping science adventions (%82.6). Conclusions: Even when patients are eligible for a clinical trial physicians may somehow not discuss the clinical trial option. For patients oncology specialists are a highly trusted source of information and can play an important role in raising awareness and encouraging participation. Patients 578 (%60.2) Family members 382 (%39.8) Education Under high school 465 (%48.2) High school or higher 500 (%51.8) Household income Under poverty level 532 (%58.3) Above poverty level 374 (%41.7) Knowledge about clinical trials I dont’t know anything 306 (%31.6) I don’t know much 271 (%28) I have little knowledge 299 (%30.9) I know well 92 (%9.5) Willingness to participate in a clinical trial Very willing 185 (%19.4) Somewhat willing 243 (%25.5) Not sure 297 (%31.1) Not very willing 143 (%15) Not at all willing 86 (%9)