Ronze M, Mamelle N, Combe C, Pugeat M
Fédération d'endocrinologie, hôpital neurologique et neurochirurgical Pierre-Wertheimer, 59, boulevard Pinel, 69677 Bron cedex, France.
Encephale. 2010 Feb;36(1):9-20. doi: 10.1016/j.encep.2009.01.002. Epub 2009 Aug 31.
Our working hypothesis is that a better insight into the outcome of patients suffering from anorexia nervosa should contribute to preventing relapses and further complications and assessing treatment efficiency. Through anorexia nervosa, the patients express the difficulty they have to view themselves as specific subjects.
The current classic outcome evaluation is based on the study of objective events, which only partially reflect the reality of the patients' outcome at a subjective level. The objective of this study was to set up a new assessing instrument of the outcome of patients suffering from anorexia nervosa, essentially based on the patients' perception of their experience.
The methodology used has been based on: (1) the conduct by the main investigator of unstructured interviews using "free association", with the help of an interview guide. The anorexia nervosa patients were recruited among those who were hospitalized on an isolation contract, or among outpatients under a psychiatrist/psychoanalyst's supervision, aged over 25 years old so that they may have started their reproductive life. The study included 30 patients; (2) the analysis of the interview contents backed by preexisting hypotheses and by new ones suggested by the expression of the patients' perception, so as to set up an inventory of new themes; (3) the construction of a self-administered questionnaire starting from the development of each theme into several questions taking up the patients' own words and offering 4 possible answers (disagree completely, disagree, agree, quite agree).
The analysis of the interviews contents has led to the development of 11 themes. The self-administered questionnaire includes a total of 124 items stemming from the development of each theme into between 9 and 16 items that were mixed in the version submitted to patients.
This original interpretation of the outcome of the patients through their experience provides a better understanding of their relation to desire and pleasure, and consequently of the evolution of their subjectivity. By integrating several aspects of the disease expression, our instrument constitutes an alternative to the combination of several non-specific tools in anorexia nervosa. It thus avoids the atomization of the pathology and respects the specificity of its structure. The analysis of the disease function in the emergence of their subjectivity rather than the static observation of its symptoms has led to the development of new themes.
The validation of this new methodological approach of the follow-up of anorexia nervosa based on the patients' perception of the evolution of their disease, aside from anthropometrical or physiological parameters, will have to be tested on a new population of patients. A quantitative score will be developed in association with the self-administered questionnaire. Its use in further epidemiological studies will enable a scientific assessment of the patients' outcome, and better prevent further complications and relapses, by screening patients with a pejorative risk. The ultimate aim is to improve these patients' care.
我们的工作假设是,更深入地了解神经性厌食症患者的预后情况应有助于预防复发和进一步的并发症,并评估治疗效果。通过神经性厌食症,患者表达了他们难以将自己视为特定个体的困难。
当前的经典预后评估基于对客观事件的研究,这仅部分反映了患者在主观层面的预后现实。本研究的目的是建立一种新的神经性厌食症患者预后评估工具,主要基于患者对自身经历的感知。
所采用的方法基于:(1)主要研究者在访谈指南的帮助下,使用“自由联想”进行非结构化访谈。神经性厌食症患者是从那些根据隔离合同住院的患者中招募的,或者是从在精神科医生/精神分析学家监督下的门诊患者中招募的,年龄超过25岁,以便他们可能已经开始了生殖生活。该研究包括30名患者;(2)根据先前存在的假设以及患者感知表达所提出的新假设,对访谈内容进行分析,从而建立新主题清单;(3)从每个主题发展出几个采用患者自己的话并提供4种可能答案(完全不同意、不同意、同意、非常同意)的问题,构建一份自我管理问卷。
对访谈内容的分析产生了11个主题。自我管理问卷总共包括124个项目,这些项目源于每个主题发展为9至16个项目,并在提交给患者的版本中进行了混合。
通过患者的经历对其预后进行这种原创性解释,能更好地理解他们与欲望和快乐的关系,从而更好地理解他们主观性的演变。通过整合疾病表达的多个方面,我们的工具构成了神经性厌食症中几种非特异性工具组合的替代方案。因此,它避免了病理的碎片化,并尊重其结构的特异性。对疾病在其主观性出现过程中的功能进行分析,而不是对其症状进行静态观察,导致了新主题的发展。
这种基于患者对疾病演变感知的神经性厌食症随访新方法,除了人体测量或生理参数外,还需在新的患者群体中进行验证。将结合自我管理问卷制定一个定量评分。在进一步的流行病学研究中使用它,将能够对患者的预后进行科学评估,并通过筛查具有不良风险的患者,更好地预防进一步的并发症和复发。最终目标是改善这些患者的护理。