Abstract

Background: We conducted a national survey of cancer patients (pts) to determine what factors influence their decision to participate in a cancer clinical trial (CCT) and what supports they use(d). Methods: Pts 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 from 22nd April to Nov 23rd 2016. Results: 1,090 pts completed the questionnaire (386 (35.6%) men and 697(64.4%) women). Median age was 60 years (IQR 50-69). 311 (29.5%) had previously been offered a CCT and 303 pts had participated. Factors most frequently ranked as important regarding decisions about CCT participation included; chance to advance research (n = 846, 81.0%); living longer/feeling better (n = 851, 81.5%); recommendation by cancer doctor (n = 797, 76.3%); closer monitoring (n = 528, 50.5%); fear of more side-effects (381,36.5%) or death (n = 337,32.3%); concerns about the treatment not working (n = 446,42.7%); increased hospital visits (n = 292, 28.0%); age (n = 355, 34.0%). Only 83 pts (9.3%) independently asked about participating in a CCT. Pts were asked about hypothetical participation in a CCT of a new drug that appeared safe but which could be better than/similar to/or worse than standard treatment (ST). 687 (65%) pts reported they would consider participation but more than half 336 (51.1%) of those reconsidered when a subsequent question re-stated the possibility the study drug could be worse than ST. Of those previously offered a CCT most (n = 214, 68.8%) had decided without help. When making decisions about CCT participation; family (n = 175, 56.2%), internet (n = 67, 21.5%) and GP (n = 48, 15.4%) were frequent sources of support. Most sources encouraged (n = 169, 54.3%) or were neutral about participation (n = 72, 23.2%). Cancer doctors and specialist nurses scored highest in terms of pts’ trust about CCT information; 250 (69.8%) and 196 (59.4%) pts gave them full scores respectively. Conclusions: Decisions about CCT’s are complex, based on personal and altruistic factors and may be influenced by the type and detail of information given and by who provides it. Few pts we surveyed asked about a CCT, but most who had been offered a CCT had participated. Legal entity responsible for the study: Catherine M. Kelly Funding: Cancer Trials Ireland with funding from Abbvie, Bayor, Amgen and Inveva for this project Disclosure: All authors have declared no conflicts of interest.

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