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.
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.
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.
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.
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