Information needs of patients with cancer: results from a large study in UK cancer centres

As part of a multi-centred study evaluating a communication skills training model for clinicians, we collected information preferences using an adapta tion of Cassileth's Information Needs questionnaire from a heterogeneous sa mple of 2331 patients. Results showed that 87% (2027) wanted all possible i nformation, both good and bad news and 98% (2203) preferred to know whether or not their illness was cancer. Cross tabulation of responses revealed no significant differences in information preferences for tumour site or trea tment aims but did show an effect of age and sex. The few 58/440 (13.2%) pa tients who stated that in general they preferred to leave disclosure of det ails up to the doctor, tended to be older patients more than 70 years of ag e (chi square = 26.01, df = 2, P< 0.0001), although paradoxically they stil l wanted to know certain specific details. In comparison to men women prefe rred to know the specific name of the illness (chi square = 4.9, df = 1. P< 0.02) and what were all the possible treatments (chi square = 8.26, df = 1 , P< 0.004). The results from this very large sample provide conclusive evi dence that the vast majority of patients with cancer want a great deal of s pecific information concerning their illness and treatment. Failure to disc lose such information on the grounds that significant numbers of patients p refer not to know is untenable. (C) 2001 Cancer Research Campaign http://ww w.bjcancer.com.