Background: Enhancing patient participation is a priority for renal services. Good quality information is fundamental to facilitate patient involvement, but in other health contexts it has been found to be sub-optimal. This research aims to audit the provision of patient information by renal units and charities and to assess the quality of written information about dialysis treatment options.
Methods: All UK renal units were sent a questionnaire about the patient information they provided. Renal units and charities that provided dialysis leaflets were asked to forward copies. Leaflet quality and content were assessed by a coding frame informed by information and decision aid checklists.
Results: Out of 105, 67 completed questionnaires were returned. Services provide patients with large amounts of information in several media (leaflets, meetings with nurses and patients, videos); computers were not used frequently. Out of 47, 32 units forwarded leaflets about dialysis, and 31 different leaflets. Most leaflets were difficult to understand and rarely included risk information or treatment limitations. No leaflets included techniques to assist patient involvement or decision-making; their primary goal was to inform.
Conclusions: These data suggest an unsystematic pattern of information provision across the UK. Vast resources have been spent on providing information to patients that is difficult to comprehend and incomplete. Research needs to identify which resources are effective in meeting patient needs and at what point in their illness. A centralized system to guide renal services in the design and development of information resources may help meet the differing goals of education, choice facilitation and preparation for self-management.