How do patients want to learn of results of clinical trials? A survey of 1431 breast cancer patients

Questionnaires were circulated to UK patients and health care professionals ( HCPs) participating in the Taxotere as Adjuvant ChemoTherapy ( TACT) trial in autumn 2004 asking if and how trial results, when available, should be conveyed to patients. A total of 1431 ( 37% of surviving UK TACT patients) returned questionnaires. In all, 30 ( 2%) patients did not want results. In all, 554 ( 40%) patients preferred to receive them via their hospital; 664 ( 47%) preferred results posted directly to their home, 177 ( 13%) preferred a letter providing a telephone number to request results. Six hundred and twelve patients thought results should come directly from the trials office. One hundred and seventy-six HCPs from 89 UK centres ( 86%) returned questionnaires. In all, 169 out of 176 patients ( 96%) thought results should be written in lay terms for patients. Seventy ( 41%) preferred patients to receive results via their hospital; 64 ( 38%) preferred a letter providing a telephone number to request results, and 32 ( 19%) preferred results posted directly to patients. Thirty-one HCPs ( 18%) thought results to patients should come directly from the trials office. A total of 868 ( 61%) patients thought next of kin of deceased patients should receive results, 543 ( 38%) did not; 47 ( 27%) HCPs thought they should; 118 ( 68%) did not.