Value in Patient-led Conferences

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

Joanna M. Zakrzewskaa, Teekayu P. Jornsb and Amy Spatzc

aEastman Dental Hospital, UCLHospitals NHS Foundation Trust, 256 Grays Inn Road, London WC1X 8LD, UK

bDepartment of Oral Biology, Faculty of Dentistry, Khon Kaen University, Khon Kaen, Thailand

cSt. George’s Medical School, London, UK


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


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


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


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


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).


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.

European Journal of Pain, July-August 2008


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