Patient led conferences--who attends, are their expectations met and do they vary in three different countries?

OBJECTIVE

To determine the demographics of attendees at three national conferences for trigeminal neuralgia sufferers, to quantify their expectations and determine if they were fulfilled.

DESIGN

A self complete questionnaire was distributed at the start and end of patient led conferences delivered by health care practitioners (HCP).

PARTICIPANTS

249 sufferers, most of whom were members of their support group.

SETTING

National conferences in US, UK and Australia organised by the Trigeminal Neuralgia Associations of the respective countries.

RESULTS

83% of attendees completed the questionnaire before the conference and 79% returned them at the end. The majority were middle aged females in pain and there was little difference between the three countries. Some attendees were newly diagnosed, others had undergone both medical and surgical therapies. Disability on the graded chronic pain scale was high in 32% of attendees and their expectations centred around increasing their knowledge about the disease and hearing about new treatments. Their expectations were fully met as shown by mean scores of 8 and above (10 being the best). Attendees particularly valued the opportunity to meet expert HCPs (mean 9.4) but also appreciated the opportunity to meet fellow sufferers (mean 8.9). Participants stated that the conference improved their confidence in dealing with their pain (mean 8.1).

CONCLUSION

Attendees at national conferences of support groups show considerable disability and their major expectations of improving their knowledge and meeting both expert HCPs and fellow sufferers are fulfilled.