Simeoni M C, Auquier P, Lançon C, Leplege A, Simon-Abbadi S, Guelfi J D
Laboratoire de Santé Publique, Faculté de Médecine, Marseille.
Encephale. 2000 Jul-Aug;26(4):35-41.
In order to provide clinicians, researchers, program evaluators and administrators with current information on the assessment of humanistic outcomes of services for schizophrenic patients, a literature review is performed in which references to quality of life (QOL) assessment were made in the context of schizophrenia. Measures are summarized according to purpose, content, psychometric properties. Fifteen QOL instruments are summarized and reflect considerable variability on the relevant criteria: 11 are developed for persons with severe and persistent mental illnesses and used among populations including a major part of schizophrenic patients; 3 are specific QOL measures for schizophrenic patients; 1 is a generic QOL instrument used among psychotic patients. Given that none of these QOL measures has been widely used or accepted as a standard, the choice of a measure must rest on the investigator's particular purpose and needs.
There is a clear need for a QOL instrument that is specific for schizophrenia, given its high prevalence and chronic nature. The lack of information related to responsiveness of these scales stresses the problems of their inclusion in clinical trials. Scales that have been used in studies of schizophrenia were nearly all developed in the United States and the relevance of their content must be questioned. Rather than relying on the literature or experts to determine those needs that are important to patients with schizophrenia, the content of the instrument should be derived from qualitative interviews with patients who are at different stages of their illness. Moreover, the questionnaire should be self-administered.
为了向临床医生、研究人员、项目评估人员和管理人员提供有关精神分裂症患者服务人文结果评估的最新信息，我们进行了一项文献综述，其中在精神分裂症背景下提及了生活质量（QOL）评估。根据目的、内容、心理测量特性对测量方法进行了总结。总结了15种生活质量工具，这些工具在相关标准上存在很大差异：11种是为患有严重和持续性精神疾病的人开发的，并在包括大部分精神分裂症患者的人群中使用；3种是针对精神分裂症患者的特定生活质量测量方法；1种是在精神病患者中使用的通用生活质量工具。鉴于这些生活质量测量方法均未被广泛使用或被接受为标准，测量方法的选择必须取决于研究者的特定目的和需求。
鉴于精神分裂症的高患病率和慢性性质，显然需要一种针对精神分裂症的生活质量工具。这些量表缺乏与反应性相关的信息，这凸显了将它们纳入临床试验的问题。几乎所有用于精神分裂症研究的量表都是在美国开发的，其内容的相关性值得质疑。该工具的内容不应依赖文献或专家来确定对精神分裂症患者重要的需求，而应来自对处于疾病不同阶段的患者进行的定性访谈。此外，问卷应该由患者自行填写。
