Patients' expectations of information provided at cancer hospitals in Japan

In order to survey patients' views on disease and treatment information that should be provided at hospitals, an anonymous self-administered questionnaire was distributed to patients at Aichi Cancer Center Hospital in 1995. All eligible first-visit outpatients (97 persons), randomly selected revisit outpatients (99 persons; about one in ten refused), and all except six eligible inpatients in good condition at discharge (97 persons) responded. Out of 293 patients (115 males, 174 females and 4 unspecified), 74% answered that they wanted to be informed of their diagnosis irrespective of circumstances, 20% answered that they would want to be informed only in certain circumstances, and 2% did not want to be informed at all. There were no significant differences in response among the three sources of patients. Inpatients wanted more (81%) to be explained about recommended therapy than either first-visit outpatients (67%) or revisit outpatients (67%). The majority considered that about a 30-minute explanation was needed using pamphlet-like written materials or video. When asked what information was needed when choosing a cancer hospital, 71% specified information on the specialty of the hospital, 57% the content of the care provided, 23% the name and specialty of the doctors, 20% the waiting period before scheduled admission, 13% the average admission period, 11% the number of patients with the same disease, 10% the waiting time at the outpatient clinic, 6% the meal menu, and 4% the number of private wards. Forty-three percent wanted an information service covering all hospitals in the region through an information center. The results revealed that patients at this cancer hospital required information on their disease, treatment, and hospital specialty.