Management, needs and expectations of patients suffering from bipolar I disorders (The ECHO study - France)

Aim

The ECHO study is the first French study directly asking patients with bipolar I disorders on the history and experiences of their disease, their perceptions of care, their sociofamilial relationships, and their expectations regarding what should be done by healthcare professionals and their environment.

Method

Three hundred euthymic patients suffering from bipolar disorder I were interviewed using a semi-standardized evaluation through telephone interviews. These patients were selected according to the quota method of nationally representative INSEE 99 to be representative of the French population.

Results

Ninety-nine percent of patients consulted at least once for psychological signs before the correct diagnosis was established. The average age at the time of diagnosis was of 30.1 years (±11.3). The average time between first consultation for psychological symptoms and diagnosis is about 5 years. In 92% of cases, the psychiatrist is the health professional that made the diagnosis; 74% of patients were also followed by a general practitioner. One hundred percent of participants had been hospitalized for manic episodes (criterion for inclusion in the study) and 86% were also hospitalized for depressive symptoms. The experience of hospitalization is positive (feeling of security for 84% of the sample, feelings of being helped for 81% of the sample), although these experiences are also associated with the perception of confinement (52% of the sample). At the time of the interview, 97% of these patients were followed by one or more health professionals. Only 34% of these patients were taking a mood stabilizer (lithium, anticonvulsant or atypical antipsychotic with indications in France for bipolar disorder), while 44% were taking an antidepressant and 38% were taking anxiolytics; 84% of patients had experienced side effects related to their current treatment. Acceptance of the disease is difficult and only 56% of patients personally feel they suffer from bipolar disorders. Patients believe that their mental health problems have a significant impact on their lives, including impact on their self-esteem and happiness. Relationships with family, friends but also sexual relations are affected. Even in the euthymic phase, 44% of patients have difficulties in their daily tasks. Three quarters of patients said they had already experienced rejection or discrimination related to their disease. Finally, patients gave a score of 6.4 out of 10 to assess the impact of the disorder on their quality of life. Patients request more dialogue with health professionals and a more personalized treatment, taking into account side effects. They also want more information on the treatment. They would also like to be supported, together with their families, and advised on how to cope with the disease.