Guillaume S, Courtet P, Chabannes J-P, Meynard J-A, Moreau-Mallet V
Inserm, U1061, 34093 Montpellier, France.
Encephale. 2011 Sep;37(4):332-8. doi: 10.1016/j.encep.2011.07.006. Epub 2011 Sep 23.
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 30.1 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.
ECHO研究是法国第一项直接询问双相I型障碍患者疾病史及经历、对治疗的看法、社会家庭关系,以及对医疗专业人员及其所处环境应采取措施的期望的研究。
通过电话访谈,采用半标准化评估方法,对300名处于心境正常期的双相I型障碍患者进行了访谈。这些患者根据具有全国代表性的法国国家统计局99年配额法进行挑选,以代表法国人口。
99%的患者在确诊前至少因心理症状就诊过一次。确诊时的平均年龄为30.1岁(±11.3)。首次因心理症状就诊至确诊的平均时间约为5年。在92%的病例中,精神科医生是做出诊断的医疗专业人员;74% 的患者也由全科医生随访。100% 的参与者因躁狂发作住院(纳入研究的标准),86% 的患者也因抑郁症状住院。住院体验是积极的(84% 的样本有安全感,81% 的样本有得到帮助的感觉),尽管这些体验也与被限制感有关(52% 的样本)。在访谈时,97% 的这些患者有一名或多名医疗专业人员随访。这些患者中只有34% 在服用心境稳定剂(锂盐、抗惊厥药或在法国有双相障碍适应症的非典型抗精神病药),而44% 在服用抗抑郁药,38% 在服用抗焦虑药;84% 的患者经历过与当前治疗相关的副作用。对疾病的接受很困难,只有56% 的患者个人觉得自己患有双相障碍。患者认为他们的心理健康问题对其生活有重大影响,包括对自尊和幸福的影响。与家人、朋友的关系以及性关系都会受到影响。即使在心境正常期,44% 的患者在日常任务中也有困难。四分之三的患者表示他们已经经历过与疾病相关的排斥或歧视。最后,患者对该疾病对其生活质量影响的评分是6.4分(满分10分)。患者要求与医疗专业人员进行更多对话,并接受更个性化的治疗,同时考虑副作用。他们还想要更多关于治疗的信息。他们也希望能与家人一起得到支持,并得到应对疾病的建议。