Cancer patients' preferences for written prognostic information provided outside the clinical context

Abstract

Cancer patients' preferences for written prognostic information independent of the clinical context have not previously been investigated. This study aimed to assist a state cancer organisation to provide information to patients by assessing patients' understanding of statistical information; eliciting their preferences for framing, content and presentation; and assessing the acceptability of a card sort for obtaining preferences. With the exception of conditional and relative survival, initial difficulties in understanding statistical concepts were improved with a plain language explanation. Analysis of the interview transcripts revealed that participants generally supported the provision of written information about survival in booklets and on the Internet. They wanted positive, relevant and clear information. Participants said that the use of, and preferences for, this information would be affected by a patient's age, time since diagnosis, ability to cope with having cancer and the perceived credibility of the information source. They found the card sort acceptable, saying it made the assessment of understanding and selection of preferences easy. This study has identified two fundamental, and sometimes conflicting, factors underlying patients' preferences: the communication of hope and the need to understand information it has also identified patient characteristics thought to influence preferences. These factors and characteristics need to be taken into account when developing written prognostic information for patients