Informing and involving cancer patients in their own care

Abstract

Doctors have long feared that disclosure of a cancer diagnosis may harm the patient. However, the vast majority of cancer patients in more developed countries prefer to have as much information as possible, regardless of whether it is good or bad. Moreover, these patients are often dissatisfied with the amount and quality of information they receive. Additionally, many patients are unable to participate to the extent that they wish in decisions about their own care, and doctors frequently fail to recognise or appreciate the role that their patients prefer in decision-making. Various information resources have been developed to meet the needs of patients and their families. This paper discusses the information needs and participation preferences of patients with cancer and the consequences of not meeting these expectations. The paper then reviews the types of information resources that have been developed focusing on their reported effectiveness. The review concludes with suggestions for future research.