Information needs of cancer patients in west Scotland: cross sectional survey of patients' views

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Abstract
Objective: To assess the needs of patients with cancer for information about their condition. Design: Cross sectional survey of patients' views by means of semistructured interview with questionnaire. Setting: A regional cancer centre and two university hospitals in west Scotland. Subjects: 250 (93%) of 269 cancer patients invited to participate in study who were selected by age, sex, socioeconomic status, and tumour site to be representative of cancer patients in west Scotland. Main outcome measures: Patients' need to know whether they had cancer, the medical name of their illness, progress through treatment, how treatment works, side effects, chances of cure, and treatment options. Results: 79% (95% confidence interval 73% to 84%) of patients wanted as much information as possible, and 96% (93% to 98%) had a need or an absolute need to know if they had cancer. Most patients also wanted to know the chance of cure (91% (87% to 94%)) and about side effects of treatment (94% (90% to 97%)). When the replies were cross tabulated with patients' age, sex, deprivation score, and type of treatment there was a linear trend for patients from more affluent areas to want more information and those from deprived areas to want less. There was a strong preference for diagnosis of cancer to be given by a hospital doctor (60% (53% to 66%). Conclusion: Almost all patients wanted to know their diagnosis, and most wanted to know about prognosis, treatment options, and side effects. We interviewed 250 patients with cancer to find out what information they wanted Almost all the patients wanted to know their diagnosis, and most also wanted to know the chance of cure and the side effects of their treatment Younger patients, women, and those receiving radical treatment in particular wanted to know more about treatment options The overwhelming preference was for the diagnosis of cancer to be given by a hospital doctor