A Colorectal Cancer Patient Focus Group Develops an Information Package

Abstract

INTRODUCTION 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. PATIENTS AND METHODS 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. RESULTS 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. CONCLUSIONS 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.