Reply from dissenting author

EDITOR,—As a former chairman of the voluntary organisation Tak Tent, which provided support in June M C McArdle and colleagues' study, and as an author of the paper, I wish to respond to the comments with a different perspective from that of my coauthors.

I share the concern expressed by Claire Foster in her commentary on our paper1 and by Heather Goodare about the lack of informed consent. It was argued in the study that such consent would introduce bias. Yet, as Goodare says, “women…communicate with each other” as members of an informal community of fellow sufferers who compare their experiences. I believe that the absence of informed consent produced a bias against those interventions that were not expected. Whereas the specialist nurse was a fully integrated member of the clinical team from the preoperative stage onwards, Tak Tent was unfamiliar and it was often three to five weeks after discharge before contact could be initiated owing to late referral.

Patients need to make sense of what is happening to them. What hidden messages were picked up by those assigned to Tak Tent? (Perhaps “Does someone doubt my capacity to cope?” or “Is my prognosis poor?”) Perhaps the difference in the anxiety scores even at one month is explained by the stressful effect of such uncertainty. Unfortunately, the study lacks information about the individual perceptions of the subjects. Nick Black has recently written about the limitations of randomised trials that ignore all context.2

Successful counselling requires the willing participation of the client. In practice only a minority of patients seek such help; therefore it is not surprising that 50 patients refused Tak Tent's support. The study took no account of compliance; it simply applied intention to treat analysis. Also, a client's contact with Tak Tent's counselling service normally lasted weeks rather than months. In retrospect, Tak Tent's decision to maintain contact (mainly by telephone befriending) with as many subjects as possible for as long as possible for the sake of the trial was mistaken and counter productive. This was one aspect of an atypical approach contrived to meet the demands of scientific research.

Nevertheless, I have no doubt about the value of specialist nurses in providing continuity of care and practical support. Helen Caulton describes the kind of complementary support that is being offered in cooperation with specialist nurses and clinicians. I am convinced that, after preparatory training, people who survive cancer can be effective befrienders to patients with similar diagnoses.