A colorectal cancer patient focus group develops an information package

In order to deliver high quality care and empower cancer patients in decision-making, good quality information and communication are essential. We describe the development of an information booklet.

A total of 22 colorectal cancer patients (12 male; median age, 72 years, range, 40-86 years) met on 3 occasions. Patients were asked to define their information needs and score them (1-4) according to importance. The information document was written. The second meeting involved feedback on the booklet. The modified booklet was reviewed/approved by the group before submission for local ethics committee approval prior to its distribution to other patients.

All participants felt the project a good idea. Essential information included the surgeon's individual morbidity, mortality, survival, recurrence data and details of adjuvant therapies (score = 4). Also important were type of surgery, complications and postoperative recovery (score = 3). Simple anatomical drawings were also considered important.

The booklet is now used to personalise information for all our patients and serves, in part, as a record of the key issues discussed during the consultation. The booklet has been evaluated in a randomised trial.