Table 3 Key findings relating to communicating research to patients

Information sheets

Patients in both trials were generally satisfied with the written information they received.

Some PRESTO trial recruiters thought study documentation was appropriate, others felt the volume of information could overwhelm patients, particularly given the nature of their injuries.

Shortening study documents and adding links to online information were suggested.

“I knew I was part of the trial but I really couldn’t remember what any of the details were, so it was nice to know what I’d actually agreed to.” (PRESTO patient interview, accepter).

Information about treatment and recovery

In both trials, there were a number of patients that felt they did not receive enough information about study interventions and that information was not presented equitably. Junior doctors were deemed unable to answer questions and consultants too busy.

Particular emphasis was thought to have been placed on the risks of surgery rather than on the impact of the interventions on daily life and return to work.

Patient perceived there to be an imbalance between the time spent discussing the trial and treatment options. PRESTO patients in particular felt they did not receive enough information about recovery.

“I came away thinking it was a spandex suit basically. Honestly that’s all I knew about it. I think maybe a picture of the potential thing you’d have to wear and also how long on average you would probably wear these things for, like just a bit more…yeah basic things like does it affect what you can wear? They were definitely answered in a way by the 3 members of the team but I can’t really recall their answers so I don’t think they were that good.” (PRESTO patient interview, accepter)

Reflecting and considering trial information

In both studies, participants found speaking to staff on multiple occasions and being given time to consider their participation and read study documentation beneficial. For one PRESTO patient, having the time to consider their participation led to them changing their mind and agreeing to take part.

“I said no at first. I had only just come in that day, and I was, you know, not with it still, but then I changed my mind.” (PRESTO patient interview, accepter)