The patient's role in the decision-making process--a perspective from the Liverpool Ocular Oncology Centre.

PURPOSE: To examine the patient's role in the decision-making process in a tertiary adult ocular oncology service.
METHODS: A prospective study was carried out of patients attending for follow-up at the Liverpool ocular oncology centre (LOOC), a tertiary adult ocular oncology service. Participants were patients who attended the clinic between September and October 2003. Through supervised completion of questionnaires, the main factors observed were: patients' preferred level of participation, patients' perceived level of participation, sources of information used by patients, and which sources they found most useful.
RESULTS: In all, 39 patients were included in the study. The majority of patients (69.2%) would have preferred to make a shared decision with the doctor (10.3% preferring an active role, 20.5% preferring a passive role), while 48.7% perceived having had a shared role (25.6% felt they had had an active role, 25.6% a passive one). Outside the LOOC, general ophthalmologists were the most frequently cited source of information from health professionals, and were also scored as the most useful. Family and friends were the most common source of informal information, followed by use of the Internet. Tape recordings of the consultations were reported as the most popular resource provided by the LOOC.
CONCLUSIONS: Patients attending the LOOC have a strong desire for involvement in the decision-making process. Patients receive little formal or informal information outside this tertiary centre. Further work is required to assess the effectiveness of physicians' communication skills and the influence of their recommendations on patient choice.