Our primary objective was to determine the content and format that is most suitable for educational events targeting patients and carers who are living with advanced cancer. Secondary objectives included examining the differences in information needs between patients and their carers, and providing an estimate of the rate of participation in educational events targeting such patients and carers. Out-patients receiving palliative radiotherapy at Toronto Sunnybrook Regional Cancer Center and their carers were invited to complete the Advanced Cancer Information Needs Survey. One hundred forty-four respondents participated in the survey. The participants identified the management of pain, fatigue, and home palliative care resources as the areas in which information was most needed. Carers displayed greater interest, and the range of topics in which they continue to seek additional information is wider. Thirty-one percent of respondents said they would participate in an educational event. A 'one-on-one' interview approach and short written materials were the preferred sources of information. Our study examined potential content areas and preferred format for proposed educational events targeting patients and carers living with advanced cancer. We also highlighted the reasons for, and potential limitations of this approach. The investment of future effort in evaluating the impact of 1 on 1 interviews and 'short written materials' on the informational needs of patients and carers living with advanced cancer is warranted.

Clinical trials generally include motivated patients with relatively good performance status. This can result in an overestimation of the effectiveness of an intervention. Clinic follow-up protocols for outcome assessment after palliative treatments suffer from high attrition rates. In this study, the feasibility of telephone follow-up for the assessment of symptom palliation in patients receiving outpatient palliative radiotherapy as a tool to evaluate outcome was examined. Patients referred for palliative radiotherapy were asked to rate their symptom distress using the modified Edmonton Symptom Assessment System (ESAS) at initial consultation. Patient demographics and analgesic consumption were collected. For those who received radiotherapy, follow-up was conducted through telephone interviews at week 1, 2, 4, 8, and 12 post-treatment using the same modified ESAS and analgesic diary. One hundred ninety patients received radiotherapy to 256 sites from January to August 1999. Seventy-eight patients (41%) died during the 12-week follow-up period. The percentage of surviving patients responding to the telephone interview ranged from 63% to 68% during the 12-week study. Telephone follow-up is a feasible tool for the prospective outcome assessment of symptom palliation in this population. It compares well to clinic visits or mailed questionnaires. However, to improve the follow-up rates, other modalities may also need to be implemented.

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