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腓骨肌萎缩症患者的心理困扰。

Psychological distress in patients with Charcot-Marie-Tooth disease.

机构信息

Italian Charcot-Marie-Tooth, Association Rehabilitation Service, Rome, Italy.

出版信息

Eur J Phys Rehabil Med. 2009 Sep;45(3):385-9.

Abstract

AIM

Charcot-Marie-Tooth disease (CMT) is a genetic neuropathy that causes variable degrees of gait and handgrip impairment, and reduces quality of life. The large majority of CMT patients are moderately affected and lead almost a normal life despite facing numerous difficulties and physical and psychological suffering. This study is aimed at investigating the possible presence of psychological distress in this population.

METHODS

Fifty-three patients (F=30, M=23; age: 16-64 years; disease duration: 1-53 years), with variable gait and handgrip impairments but still able to ambulate independently, referred to a specialized rehabilitation service, and 53 sex and age matched controls were administered with the Kellner's Symptom Questionnaire Italian validated version.

RESULTS

The mean scores of patients, both as a whole and as divided in groups according to sex, age and lower limb impairment severity, did not differ significantly from those of controls (P>0.05).

CONCLUSION

Patients with CMT are able to cope with the problems caused by their disease without developing more psychological distress than unaffected subjects, probably as the result of a comprehensive adaptation, favoured by the long disease duration, relative mildness of symptoms, good cognitive functioning and availability of rehabilitative resources.

摘要

目的

Charcot-Marie-Tooth 病(CMT)是一种遗传性周围神经病,可导致不同程度的步态和手部抓握障碍,并降低生活质量。绝大多数 CMT 患者病情中等,尽管面临许多困难和身心痛苦,但仍能过上几乎正常的生活。本研究旨在调查该人群中是否存在心理困扰。

方法

53 名患者(F=30,M=23;年龄:16-64 岁;疾病持续时间:1-53 年),步态和手部抓握障碍程度不同,但仍能独立行走,被转介至专门的康复服务机构,同时纳入 53 名性别和年龄匹配的对照组,使用 Kellner 症状问卷意大利验证版进行评估。

结果

患者的平均得分,无论是整体还是根据性别、年龄和下肢损伤严重程度分组,与对照组相比均无显著差异(P>0.05)。

结论

CMT 患者能够应对疾病引起的问题,而不会产生比未受影响的个体更多的心理困扰,这可能是由于全面适应、疾病持续时间长、症状相对较轻、良好的认知功能和康复资源的可用性所致。

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