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Investigating the decision making
process in patients with non-curative
cancer who have been invited to join a
clinical research trial
Supervision team:
Mary Murphy
Prof Donna Fitzsimons
Prof Eilis McCaughan
Dr Richard Wilson
This is an R & D HSC funded fellowship
Study Aim
To understand the decision making processes of
patients with incurable cancer, within the context of
clinical research trials.
Setting and Data Collection
 BHSCT Cancer Centre
 Range from Phase I to Phase III
 In-depth interviews -16 patients and 18 members
of the research team
 Grounded Theory approach
 In depth interviews with patients and Research
Team (RT)
 Data interlinked
 Constraints of classic GT not doing data justice
Research Staff
informationbalanced or
Nothing to
Trusting the
Clinging to
a straw
Nothing to lose
‘I just don’t think…. It’s a no brainer, really. If a
consultant says to you, “Listen this is what we’ve
got, an opportunity here to improve your situation.
It hasn’t been done before. Would you be
interested in doing it?” And you have nothing else.
There is no other hope in the room, this is the only
thing on the table, what are you going to do?’ (P01)
Trial information balanced or
‘Mostly we are offering them a carrot that maybe
this is the next magical drug for their disease….. I’d
say, “I haven’t got another treatment that offers you
any benefit and therefore we are hoping that this
might be a drug that is the magical drug but it is a
very long shot.” ’ (RT14)
Increased personalised care
‘She [clinical research nurse] says, “You will still be
looked after the same way. You will still be getting
the same appointments to come up. You will be
coming up more often.” Which is what I want. I
want to get a bit more attention. “You’ll be treated
like a VIP” she says. I went, “That’s fine.” ’ (P06)
Privileged opportunity
 Patients reported feeling lucky to be given the
 Research team were unsurprised by this
‘Well I think if you are offered something that you
have no access to ordinarily, I think that probably
would make you feel special.’ (RT08)
Selective hearing
 Trial acceptors showed a disregard for sideeffects of trial drug
 Some thought that trial participation might result
in a cure
 Research staff were aware of this stating that
‘they hear what they want to hear’ (RT08)
Clinging to a straw
‘I just want to live. I’ll take anything.’ (P02)
 Patients were hopeful for life extension
 For some a trial was the only treatment option
‘And so I sort of thought in one way it did give a
sense of hope, that at least there are trials, but on
the other hand you sort of think, he’s referring you
to that, because he’s got nothing else.’ (P01)
Trusting the research team
Many believed that their oncologist was offering
them a trial because they believed it to be their
best option
‘I didn’t think to bother to question it because I just
took the view that they’re not going to give me
something that’s absolutely stupid. I trust them and
I’m not going to question this’. (P02)
Helping others
 Research staff asserted that patients sometimes
joined trials primarily to help others
 No patients reported altruism as a primary
reason for saying ‘yes’
‘I’m not trying to pretend that it’s all for someone
else. I’m hoping that this treatment will be of benefit
to me.’ (P04)
Research team
-Balanced information
-Selective hearing
-Helping others
-Clinging to a
Nothing to lose
-Positive information
-Altruism secondary
 Trial participation makes patients feel special
and endorses hopes for personal benefit
 Participants agreed that trial benefit extended
well beyond the drug available
 Patients were aware of reality but held
unrealistic hopes for personal benefit
 Nothing to lose is a central theme for most
 Consensus that trial participation offers last and
best option
 Groups differ on whether information is
balanced or skewed
 Patients have unconditional trust in their
oncologists – impacting on “informed” consent
Implications for Practice
 The context is more important than the trial for
patients’ decision making
 The RT need to be mindful of patients’ trust
 Trial participation may offer an alternative way for
patients and HCPs to address End of Life issues