Guillem-Mesado A, de Andrés C, López-Longo J, Giménez-Roldán S
Servicio de Neurologia, Hospital General Universitario Gregorio Marañón, Madrid, España.
Rev Neurol. 1998 Jan;26(149):25-8.
It may be difficult to determine the adequate mement, the information content and the most convenient person to inform patients with chronic, incurable disorders with uncertain prognosis as sclerosis multiple (MS).
To gain information on how these aspects had been carried-out and the extent to which patients felt satisfied, we studied 60 definite MS ambulatory patients by means of a semistructured questionnaire attending a hospital-based MS unit. The results were compared with those from 40 patients with rheumatoid arthritis (RA), a chronic disabling disorder of the locomotor system with variable course, examined in a similar way.
In the vast majority of patients (81.7 and 82.9%, respectively) in both groups the diagnosis had been delivered by a specialist, a point on which most patients agreed upon as convenient. However, most MS patients (78.4%) and nearly all of those with RA (97.6%) should have desired to receive information on their diagnosis as soon as this might had been firmly established. Though more than half the patients (61.7 of MS and 56.1% of RA) admitted to have developed depressive symptoms following information on their diagnosis, a majority expressed their desire to have been informed early about 'all the truth' regarding their prognosis (78.4 and 87.8%, respectively).
Though data from this study should be taken with caution when applied to MS patients shortly after experiencing their first symptoms, and it is therefore unwise to give rigid rules, the vast majority of MS patients express the desire to receive early, accurate, and individualized information on their diagnosis provided by a competent specialist.
对于像多发性硬化症（MS）这种预后不确定的慢性不治之症患者，可能难以确定告知的适当时间、信息量以及最合适告知的人。
为了解这些方面的实施情况以及患者的满意程度，我们通过一份半结构化问卷对60名确诊的MS门诊患者进行了研究，这些患者来自一家医院的MS科室。将结果与40名类风湿关节炎（RA）患者的结果进行比较，RA是一种运动系统的慢性致残性疾病，病程多变，采用类似方式进行检查。
两组中的绝大多数患者（分别为81.7%和82.9%）由专科医生告知诊断结果，大多数患者认为这很方便。然而，大多数MS患者（78.4%）以及几乎所有RA患者（97.6%）都希望在诊断结果确定后尽快得到相关信息。虽然超过一半的患者（MS患者为61.7%，RA患者为56.1%）承认在得知诊断结果后出现了抑郁症状，但大多数患者表示希望尽早被告知关于其预后的“全部真相”（分别为78.4%和87.8%）。
尽管本研究的数据在应用于刚出现首发症状的MS患者时应谨慎对待，因此制定严格规则并不明智，但绝大多数MS患者表示希望从专业专科医生那里尽早获得关于其诊断的准确、个性化信息。
