GAMIAN-Europe/BEAM survey I - global analysis of a patient questionnaire circulated to 3450 members of 12 European advocacy groups operating in the field of mood disorders

Objectives: GAMIAN‐Europe is a pan‐European federation of national patient organizations from 30 European countries covering the whole spectrum of psychiatry. To gain a better understanding of what it is like to live with bipolar disorder (BD), GAMIAN‐Europe undertook a detailed patient‐based questionnaire, known as ‘GAMIAN‐Europe/BEAM Survey’, examining a variety of aspects. Methods: The questionnaire was mailed to 3450 patients from 12 member organizations in 11 countries. A total of 1760 completed questionnaires were received but 28 were ruled out as inappropriate. Of the remainder, 1041 respondents stated that they had been, or were, suffering from BD. The remainder stated that they were suffering from depression, dysthymia or atypical depression. Results: The findings indicate that, on average, a bipolar patient is expected to wait for 5.7 years for a correct diagnosis from the first onset of symptoms. Many patients have a family history of mood and anxiety disorders. They experience a high degree of stigmatization from all quarters. This is reflected in the difficulties they experience in obtaining employment despite high academic achievement. Most patients receive combination therapy. Compliance problems resulting from adverse side‐effects are less significant than in the past. Overall, the level of satisfaction with pharmacotherapy was high yet, paradoxically, patients had reservations about dependency issues and possible long‐term side‐effects. Conclusions: There was a clear need for more patient education about pharmacological and psychosocial interventions, despite material progress having been made over the past decade. There is an urgent need for more information and education for both relatives and the public in most European countries to improve awareness and understanding of BDs and other mood disorders and the doctor–patient dialogue.