Les études évaluant le ressenti et le vécu des troubles par les patients sont utiles pour élaborer des prises en charge plus efficaces. Cette enquête est la première en France interrogeant des patients souffrant d’un trouble bipolaire I. Trois cents patients euthymiques ont été interrogés à l’aide d’une évaluation semi-standardisée au travers d’entretiens téléphoniques. L’objectif était d’avoir un reflet du vécu et des attentes que ces patients ont de leurs troubles et de leurs prises en charge. Le délai moyen entre la première consultation et le diagnostic est d’environ cinq ans. Dans 92 % des cas, le psychiatre est l’intervenant de santé qui a posé le diagnostic alors que 74 % des patients étaient également suivis par un médecin généraliste. Au moment de l’entretien, 97 % de ces patients étaient suivis par un ou plusieurs professionnels de santé, 93 % déclaraient prendre un traitement mais seul 34 % ont mentionné prendre un stabilisateur de l’humeur. Quatre-vingt-quatre pour cent des patients ont déjà ressenti des effets secondaires liés à leur traitement actuel. L’acceptation de la maladie est difficile et 56 % des patients seulement se sentent bipolaires. Même en phase d’euthymie, 44 % des patients ont des difficultés dans leurs tâches quotidiennes. Trois quarts des patients déclarent avoir été l’objet d’attitudes de rejet ou de discrimination directement liées à leur maladie. Les patients demandent encore plus de dialogue avec les professionnels de santé et un traitement plus personnalisé, mieux expliqué et tenant compte des effets secondaires. Ils souhaitent également plus d’accompagnement et de conseils les aidant eux et leurs proches à vivre avec la maladie. Ces données éclairent sur les insuffisances en termes diagnostic et thérapeutique. Elles aident également à mieux appréhender le vécu et les attentes de nos patients.

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.

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.

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 30.1years (±11.3). The average time between first consultation for psychological symptoms and diagnosis is about 5years. 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.