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Exploring treatment preferences to improve recruitment . Jenny Donovan School of Social and Community Medicine . Recruiting patients is difficult. Many RCTs experience slow recruitment or have to close before completion Recruitment is very different to usual clinical practice
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Exploring treatment preferences to improve recruitment Jenny Donovan School of Social and Community Medicine
Recruiting patients is difficult • Many RCTs experience slow recruitment or have to close before completion • Recruitment is very different to usual clinical practice • Expressing uncertainty is not always comfortable • Can feel like recruitment takes up a lot of time • ... and patients often seem to have strong treatment preferences...
Treatment preferences: received wisdom • Preferences make trial recruitment very difficult • Often, the treatment preferences expressed by patients seem sensible, so it is impossible to recruit them • Challenging patient preferences is coercive and feels too uncomfortable • ... But the literature is very sparse and inconclusive
Treatment preferences • Many patients express preferences for a particular treatment • Views come from experiences, friends, relatives, media (especially newspapers and Internet), family doctors ‘‘If I did have anything done, I would prefer the surgery.. I don’t know that much about it but I think if you have surgery probably they remove it and I would sooner have that and be done with it.’’ ‘‘[Treatment B] sounds to me like the right thing to do. I don’t like being in hospital and so I’d prefer not to be in as long as is needed for [Treatment A]. That’s what I feel at the moment, I think.” ‘‘I don’t think I need something as severe as [Treatment A]. I don’t want all those side effects.”
Treatment preferences • In a RCT actively recruiting patients, we carried out an empirical study of treatment preferences • Investigated 93 consecutive appointments (audio-recorded) • What preferences were expressed, when, what happened to them • What relationship was there to eventual randomisation and treatment received • Qualitative content and thematic analysis Mills N et al. Journal of Clinical Epidemiology 2011, 64 (2011) 1127-1136
Mills N et al. Journal of Clinical Epidemiology (2011) 64 1127-1136 Preferences 24 (26%) chose treatment 69 (74%) were randomised 93 participants 64 (69%) Preference expressed 29 (31%)No preference expressed 28 (97%)Agreed to be randomised Detailed discussion of treatments and trial rationale 16 (25%)Clear (real) preference 48 (75%)Became uncertain 16 Received chosen treatment 10 (21%) Chose treatment 38 (79%) Randomised ProtecT trial
Treatment preferences • Most patients will express a treatment preference • On continuum: strong-vague, informed-not • Can be explored and change ‘‘If I did have anything done, I would prefer the surgery.. I don’t know that much about it but I think if you have surgery probably they remove it and I would sooner have that and be done with it.’’ ‘‘[Treatment B] sounds to me like the right thing to do. I don’t like being in hospital and so I’d prefer not to be in as long as is needed for [Treatment A]. That’s what I feel at the moment, I think.” ‘‘I don’t think I need something as severe as [Treatment A]. I don’t want all those side effects.”
Preferences among clinicians? “There’s a proportion of patients who will say to me, “What do you think doctor?” And in that situation, I think my gut feeling is important. I always tell them … I wouldn’t have become a surgeon if I thought another form of therapy was the best form of therapy, would I?”
Learning to live with uncertainty “It used not to be the thing for a surgeon to say, uncertainty, and I had a phase where I was very uncomfortable… But increasingly I have become much more open … I say, ‘I do not know’. I wish I had the answers, but no, I don’t. So being undecided used to be an uncomfortable feeling, but now, yes, it is part and parcel of it.”
ACST-2 recruitment study • Phase I • Interviews with • Members of the TMG • PIs and active recruiters • Potential RCT participants (patients) • Patient pathway mapping • Audio-recording of recruitment appointments • Phase II • Feedback of findings to CI and TMG • Plan for changes, training and feedback • Implementation of plan