How do patients want to learn of results of clinical trials? A survey of 1431 breast cancer patients.
Johnson L, Barrett-Lee P, Ellis P and Bliss JM; on behalf of the TACT Trial Management Group
British Journal of Cancer, 2008, 98, 34-38
This excellent paper describes a fascinating piece of work examining an aspect of clinical trials about which we know surprisingly little. Like all good research, the answers it provides lead to additional questions for future exploration.
Participants in the UK-based Taxotere as Adjuvant Chemotherapy (TACT) trial, comparing a taxane-based regimen with one of two anthracycline-containing non-taxane regimens were approached during the follow-up period, before trial results were available, to seek their preferences about dissemination of the trial results to themselves and their relatives.
Trial participants were provided with a questionnaire explaining some potential advantages and disadvantages of three methods of distributing results to them. These methods include posting results out as soon as they are available, writing to inform participants that the results are available and providing a phone number to call for the results, or communicating results at a routine hospital visit. In addition, those who had expressed a preference for postal communication were asked if they wished to receive it from their treating hospital or if their address should be made available to the trials unit (in this case the Institute of Cancer Research) so that the results could be posted to them directly. It is not current practice for such patient information to be passed to a trials unit and under current data protection legislation explicit consent for such transmission would be required. Participants were also asked whether the next of kin should be told of the trial results if they had died before results became available. Those answering yes were also asked whether the next of kin should still be able to receive the results if the patient had decided that they did not want them.
Healthcare professionals were sent a similar questionnaire. An additional question was asked of them: those expressing a preference for results to be given by a clinician or nurse were asked whether this should be at the next hospital visit or whether patients should be specifically recalled.
A total of 1431 trial participants (37% of the trial population alive at the time) responded. Only 30 of these (2%) did not want to receive results, and six did not offer an answer. There were fewer responses from healthcare professionals (176). Only five of these (3%) did not want patients to receive results. Between healthcare professionals and patients, 47% of patients, but 19% of professionals wanted the results to be posted when they became available. Overall, 13% of patients and 38% of professionals thought a letter should be posted informing that results were available, and providing a national helpline number. Similar proportions, 40% of patients and 41% of healthcare professionals, felt that results should be given by a clinician or nurse at a hospital visit. The vast majority of professionals (93%) thought this should be at a routine visit. In total, 79% of those patients who wanted the results to be posted thought this should come from the central trials unit, compared with only 38% of the healthcare professionals for whom this was the first choice. It would be interesting to know whether the healthcare professionals' view here was influenced by their knowledge that it is currently not possible for the central trials unit to do this because they do not hold the information, or if this was a view held for another reason. Similarly, there was almost a 50/50 split between distribution of a letter by a patient's hospital and by the central trials unit among those who felt a letter should be sent offering access to a central helpline. It would be very interesting to explore further the difference between the views of professionals about postal communication with those of patients. Only 19% of professionals were happy with the information being provided in letter form, whereas 47% of patients preferred this option. One can speculate that the professionals felt that a human interlocutor could better immediately tackle any difficulties of interpretation, or reaction to having been treated in the so-called 'inferior' treatment samples; however, there may be other explanations and whether the patient would accept that this was an appropriate approach or regard it as overly paternalistic would also be interesting to know.
How do we communicate information to patients? Clearly there is no consensus among either patients or professionals although, as noted, professionals clearly feel that some form of human interaction is to be preferred. It would be interesting in the future to ask the more negative question, is there a form of communication that patients would find significantly less acceptable?
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|Publication:||Advances in Breast Cancer|
|Date:||Mar 1, 2008|
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