Patients’ willingness to participate in clinical trials and their views on aspects of cancer research: results of a prospective patient survey

Abstract

BackgroundRecruitment to clinical trials can be challenging and slower than anticipated. This prospective patient survey aimed to investigate the proportion of patients approached about a trial who agree to participate, their motivations for trial participation and their views on aspects of cancer research.MethodsPatients who had been approached about participation in any clinical trials in the Gastrointestinal and Lymphoma Unit at the Royal Marsden were invited to complete a questionnaire. The statistical analysis is mainly descriptive, with percentages being reported. Univariate logistic regression analysis was used to determine any associations between patient characteristics and patient responses.ResultsFrom August 2013–July 2014, 276 patients received 298 clinical trial patient information sheets and were asked to complete the questionnaire. The majority of patients (263 patients, 88 %) consented to a clinical trial and 249 of the 263 patients (95 %) completed the questionnaire. Multiple factors influenced decisions to participate in clinical trials, with patients stating that the most important reasons were that the trial offered the best treatment available and that the trial results could benefit others. Of the 249 questionnaire respondents, 78 % would donate their tissue for genetic research, 75 % would consider participating in studies requiring a research biopsy and 75 % felt that patients should be informed of trial results. Patients treated with palliative intent and those who had received multiple lines of treatment were more willing to consider research biopsies. Of the patients approached about a clinical trial of an investigational medicinal product, 48–50 % would have liked more information on the study drugs/procedures.ConclusionThe majority of patients approached about a clinical trial consented to one or more trials. Patients’ motivations for trial participation included potential personal benefit and altruistic reasons. A high proportion of patients were willing to donate tissue for research and to consider trials involving repeat biopsies. The majority of patients feel that participants should be informed of trial results and there is a group of patients who would like more detailed trial information.Electronic supplementary materialThe online version of this article (doi:10.1186/s13063-015-1105-3) contains supplementary material, which is available to authorized users.

Acceptability of opt‐out consent in a hospital patient population

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“…A key strength of this study is the sample size, which is the largest reported in this field, and the diversity and potential generalisability of its sample population. Thirty‐three percent of participants in this study were of European descent, higher than that of the Moorcraft ( n = 276) and Kaufman ( n = 451) studies (14% and 20% respectively). More than half the participants preferred an opt‐out approach compared to the conventional opt‐in method and support for an opt‐out model was comparable between different age groups, genders, employment status and cognitive ability.…”

A guided self-help intervention targeting psychological distress among head and neck cancer and lung cancer patients: motivation to start, experiences and perceived outcomes

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“…Although most cancer patients do not participate in cancer trials, most of those who are approached to do so, do not decline to participate (Van Der Biessen,2013;Catt, Langridge, Fallowfield, Talbot, Jenkins, 2011; Moorcraft , Marriott, Pecket, et.al., 2016). For this reason, it has proven difficult for researchers to study decliners.…”