Clinical trials are critical to improve cancer outcomes. We conducted a nationwide survey to assess oncology patients (pts) understanding of some fundamental concepts in clinical trial methodology.
Patients with a diagnosis of malignancy, ≥18 years, able to provide informed consent and complete a questionnaire independently were eligible. Questionnaires were administered to pts attending 14 cancer centres across Ireland. Collection began 22nd April 2016 and ended Nov 23rd 2016.
The median age of the 1,090 pts completing the survey was 60 years (IQR 50-69), comprising 386 (35.6%) men and 697 (64.4%) women. 303 pts (27.8%) stated they had previously participated in a cancer clinical trial. Most were diagnosed between 2014-2016 (694, 66%). Breast (31.4%), colorectal (15.6%), haematological (12.6%), genitourinary (11.6%) and lung (6.8%) were the most commonly reported cancer types. Almost all pts (n = 1048, 98.3%) considered it important to have clinical trials available in Ireland. Most pts (n = 841, 82.3%) reported understanding the term medical/cancer clinical trials. Pts were given statements about clinical trials and asked to indicate whether they were ‘True’ or ‘False’ or to mark as ‘Don’t know’ if they were unsure. When asked ‘In a randomised trial the treatment you get is decided by chance’ 334 (33.5%) pts answered ‘True’, 425 (41.4%) answered ‘False’ and 257 (25%) answered ‘Don’t know’. When asked ‘Clinical trials are only used when standard treatments have not worked’ 226 (22%) pts answered ‘True’ and 273 (26.6%) answered ‘Don’t know’. When asked ‘My doctor would know which treatment in a clinical trial was better’ 581 (56.5%) pts answered ‘True’, and 238 (23.2%) answered ‘Don’t know’. When asked ‘My doctor would make sure I get (got) the better treatment in a clinical trial’ 633 (60.9%) answered ‘True’. Of the 303 pts who had taken part in a cancer clinical trial 185 (63.6%) answered ‘True’.
Although oncology pts consider it important to have clinical trials available to them, many do not understand key concepts such as randomisation, chance and equipoise. The data collected from this study will be used to address this and develop customised interventions to improve understanding and informed trial participation.
Clinical trial identification
Legal entity responsible for the study
Catherine M. Kelly
Funding provided to Cancer Trials Ireland by Amgen, Abbvie, Bayor and Inveva
C.M. Kelly: Funding was provided by the following companies; Bayer, Amgen, Abbvie, Inveva to Cancer Trials Ireland (formerly ICORG) our National Clinical Trials group. The research conducted was totally independent of these funders. All other authors have declared no conflicts of interest.