Rocamora J F, Benadhira R, Saba G, Stamatadis L, Kalalaou K, Dumortier G, Plaze M, Aubriot-Delmas B, Glikman J, Januel D
Secteur G03 EPS de Ville-Evrard, Hôpital Romain-Rolland, 93000 Saint-Denis.
Encephale. 2005 Jul-Aug;31(4 Pt 1):449-55. doi: 10.1016/s0013-7006(05)82406-6.
Announcement of schizophrenia diagnostic to the patients is a topical issue in France. The evolution in clinical practices, a better efficiency in therapeutic procedures and the fundamental right of the patient to obtain information have initialised the discussion of its interest. Spontaneous claim for information from the patient is rarely observed although awareness troubles might be reported at the instauration of the mental disorder or during its evolution. Methodological studies concerning the diagnostic announcement are limited. Except the Bayle studies recently published, only a few publications are available in France about the knowledge of their pathology and their need to be clearly informed. French scientific literature deals generally about medico-legal aspects of this information and consisted of survey about diagnostic announcement. International literature is more abundant and presents positive and negative aspects of the announcement. An information procedure of schizophrenia announcement to the patient has been developed in our hospitalisation unit of psychiatry. This procedure has taken place on the basis of the literature data, our specificity and our clinical experiences. For some Anglo-American psychiatrists who have proceeded to semi-structured interview in order to announce the diagnostic, information to the patients might improve the clinical relationship. Thus, compliance to the treatment is significantly increased. The ability of the patient to recognise the symptoms of the disease and to accept their consequences and the treatments is associated to a better social prognosis, daily activities and response to the treatment. The announcement impact justifies the prescription of neuroleptics, treatment that is notoriously perceived as prejudicial by the patients themselves or more commonly in the basic population. To obtain compliance to the treatment, a satisfactory acceptance of the mental disorder is required. Compliance is based on satisfactory information in order to gain the cooperation of the patient and its relative (10). Atkinson has classified four main types of arguments, the ethical principle to be informed, talk to explain and give sense to the symptoms, reduce the feeling of guilt perceived by the patient and his relative and enhance the collaboration between the patient and the nursing staff. According to Ferreri and Bayle studies French psychiatrists reluctance to announce schizophrenia diagnostic are the following: lack of request or of interrogations asked by the patient about their disease, diagnostic and prognosis uncertainty and irreversibility of the disease, complexity of the pathology and its origin which hinder an accessible explanation, cognitive disorders frequently observed with schizophrenic patients which may be associated with difficulties of understanding information, destabilization of the patient-nursing staff relationship and social stigmatisation risks. Other arguments like reluctance to give a "label" to the disease, too abstract diagnostic, a negative social vision and the possibility of discouragement for the relative are classically retrieved in French literature. In fact, divulgation of the term schizophrenia involves a panel of negative representations and is hindered by the confusion in the social imagination of such a term related with lost of control, quintessence of madness, dangerous behaviour possibilities, evil and incurability. Some psychiatrists do not transmit information arguing that significant obstruction of the future may be consecutive to the information. They prefer to use vague terms more socially acceptable like "nervous breakdown or depression, atypical or emotional disorder, dissociative troubles...". Information to the patient about his mental disorder is more frequent in psychiatry for affective, anxious and additive troubles than for schizophrenia. Our procedure of diagnostic announcement has been elaborated after preliminary discussion with the medical and nursing staff. Diagnostic of schizophrenia announcement has been presented by weighing the pros and cons according to the intemational literature. It clearly appeared that benefits for the patients prevail on the drawbacks. Nevertheless, inclusion and clinical supervision have to be carefully precised in particular to verify the ability to receive information. Short term objectives: deliver progressively information to the patient about his disease by means of an active and educational process with hope and optimism using a accessible language (explanation of each terms used with the intention of being well understood); quantify the impact of diagnostic announcement on the schizophrenic patient using clinical rating scales during a period of one month (clinical interview at day 1, day 7 and day 28). Mid term objectives: improve the global supervision and autonomy of schizophrenic by means of a therapeutic project helping the patient to become an active partner in the monitoring of his mental disorder; enhance a psycho-educational program after the procedure of announcement in order to optimise the observance of his treatment, increase his quality of life and answer to the requests of his relative; 45 patients (age 29.3 +/- 8.8 years old) have been included to be informed on their diagnostic since the elaboration of this procedure during a time period of 24 months. Time interval between the beginning of their pathology and the delivering of this information was 4.7 years. Most of them (56%) presented a paranoid type of schizophrenia. In most of the cases, the patients did not know their diagnostic or declared suffering from a diagnostic, which was erroneous; 80% of the 45 patients have complied with the procedure until its end. On more than 24 of following after the instauration of the diagnostic announcement procedure, these patients ha ve presented satisfactory observance to the medical supervision (medical consultation and drug intake); 60% of the patients were regularly present to their medical appointment. The number of patients included (45 patients) appears small compared to the time interval of the study (24 months) but was significant according to the great changes in our clinical approach. Thus, this procedure was not systematically applied, in particular the patients who did not want to be informed on their disease. Is it clinically relevant or not to announce diagnostic of schizophrenia to the patient? This issue remains questioned according to the few studies published at the present time, any consensus has been clearly presented on formal indications or contra-indications. If on an ethical side, this information appears logical, the medical and nursing staff should require special care. Special care must be taken before delivering information to the patients; each situation must be evaluated in order not to comply with an ideology of total and inadequate information, which could have serious consequences. Nevertheless, it appeared clearly that information must be given to stabilized patients with satisfactory insight. Moreover, psychotherapeutic projects become easier because patients awareness and understanding towards pathological symptoms are greatly improved. Partnership between patient and medical staff is the key of this dynamic and psycho-educative procedure, which opens new horizons in our therapeutic prospect.
向患者宣布精神分裂症诊断在法国是一个热门话题。临床实践的演变、治疗程序效率的提高以及患者获取信息的基本权利引发了对这一问题的讨论。尽管在精神障碍初发或病程中可能会出现意识障碍,但很少观察到患者主动要求获取信息。关于诊断告知的方法学研究有限。除了最近发表的贝勒研究外,法国关于患者对自身病情的了解以及明确告知需求的出版物很少。法国科学文献通常涉及这一信息的法医学方面,包括关于诊断告知的调查。国际文献更为丰富,呈现了诊断告知的积极和消极方面。我们医院的精神科住院部制定了向患者宣布精神分裂症诊断的信息告知程序。该程序是基于文献数据、我们的特殊性以及临床经验制定的。对于一些进行半结构化访谈以宣布诊断的英美精神病医生来说,向患者提供信息可能会改善临床关系。因此,治疗依从性会显著提高。患者识别疾病症状、接受其后果和治疗的能力与更好的社会预后、日常活动及对治疗的反应相关。诊断告知的影响证明了使用抗精神病药物治疗的合理性,而患者自身或普通人群通常认为这种治疗有不良影响。为了获得治疗依从性,需要患者对精神障碍有令人满意的接受度。依从性基于充分的信息,以便获得患者及其亲属的合作(10)。阿特金森将主要的四类论据进行了分类,即告知的伦理原则、解释症状并赋予其意义、减轻患者及其亲属的内疚感以及加强患者与护理人员之间的合作。根据费雷里和贝勒的研究,法国精神病医生不愿宣布精神分裂症诊断的原因如下:患者对自身疾病缺乏询问或质疑、诊断和预后的不确定性以及疾病的不可逆转性、病情及其病因的复杂性阻碍了通俗易懂的解释、精神分裂症患者常见的认知障碍可能导致理解信息困难、患者与护理人员关系的不稳定以及社会污名化风险。法国文献中还经常提到其他论据,如不愿给疾病“贴标签”、诊断过于抽象、负面的社会观念以及可能使亲属感到气馁。事实上,“精神分裂症”一词的传播涉及一系列负面表象,并且由于社会想象中该词与失控、疯狂的精髓、危险行为可能性、邪恶和不治之症的混淆而受到阻碍。一些精神病医生不传达信息,认为告知可能会给未来带来重大阻碍。他们更倾向于使用社会上更易接受的模糊术语,如“精神崩溃或抑郁、非典型或情感障碍、解离性障碍……”。在精神病学中,向患者告知情感、焦虑和成瘾性障碍方面的精神疾病信息比精神分裂症更为常见。我们的诊断告知程序是在与医护人员初步讨论后制定的。根据国际文献权衡利弊后,提出了精神分裂症诊断告知。显然,对患者的益处大于弊端。然而,必须特别明确纳入标准和临床监督,尤其是要核实患者接收信息的能力。短期目标:通过积极且具有教育意义的过程,以充满希望和乐观的态度,用通俗易懂的语言逐步向患者告知其病情(解释每个术语的意图以确保被充分理解);在一个月的时间内,使用临床评定量表量化诊断告知对精神分裂症患者的影响(第1天、第7天和第28天进行临床访谈)。中期目标:通过一个治疗项目帮助患者成为精神障碍监测的积极参与者,从而改善对精神分裂症患者的整体监督和自主性;在告知程序后加强心理教育项目,以优化其治疗依从性、提高生活质量并回应其亲属的需求;自该程序制定后的24个月内,已有45名患者(年龄29.3±8.8岁)被纳入并被告知其诊断。从发病到告知这一信息的时间间隔为4.7年。其中大多数(56%)表现为偏执型精神分裂症。在大多数情况下,患者不知道自己的诊断,或者声称患有错误的诊断;45名患者中有80%完成了整个程序。在诊断告知程序开始后的24个月以上,这些患者对医疗监督(医疗咨询和药物摄入)表现出令人满意的依从性;60%的患者定期就诊。与研究的时间间隔(24个月)相比,纳入的患者数量(45名)似乎较少,但根据我们临床方法的巨大变化,这一数量具有重要意义。因此,该程序并未系统应用,特别是对于那些不想了解自己病情的患者。向患者宣布精神分裂症诊断在临床上是否相关?根据目前发表的少数研究,这个问题仍然存在疑问,尚未明确提出关于正式适应症或禁忌症的共识。从伦理角度看,这一信息似乎合乎逻辑,但医护人员应格外谨慎。在向患者提供信息之前必须格外小心;必须评估每种情况,以免遵循全面但不充分信息的观念,这可能会产生严重后果。然而,显然必须向洞察力良好且病情稳定的患者提供信息。此外,心理治疗项目变得更加容易,因为患者对病理症状的认识和理解有了很大提高。患者与医护人员之间的合作是这一动态且具有心理教育意义程序的关键,它为我们的治疗前景开辟了新的视野。