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青少年及成人囊性纤维化的心理社会和精神方面

The psychosocial and psychiatric side of cystic fibrosis in adolescents and adults.

作者信息

Pfeffer P E, Pfeffer J M, Hodson M E

机构信息

Department of Cystic Fibrosis, Royal Brompton and Harefield NHS Trust, Sydney Street, London SW3 6NP, UK.

出版信息

J Cyst Fibros. 2003 Jun;2(2):61-8. doi: 10.1016/S1569-1993(03)00020-1.

Abstract

Increasing numbers of cystic fibrosis (CF) patients are surviving into adulthood. An understanding of the psychiatric and psychosocial aspects of CF in adults and adolescents is therefore more important than ever. There is a large body of evidence indicating that the psychological and psychosocial functioning of people with CF is similar to that of well people, until the disease becomes severe. However, there is also evidence that patients do suffer an increased likelihood of psychiatric problems, such as depression, and of scoring poorly on physical functioning measures of quality of life. Studies have found conflicting evidence as to any association between degree of respiratory impairment and psychological functioning. Coping styles seem to have a large effect upon the quality of life of CF patients. People with cystic fibrosis can have problems with sexuality, platonic relationships and independence. Families of patients also suffer problems, which can affect the patients themselves. Non-compliance is a complicated problem with many patients. New treatments for people with CF are emerging, such as lobe transplants from live donors and gene therapy, with possible new psychosocial problems resulting. Furthermore, older studies are becoming increasingly inapplicable as treatment and prognosis changes. Therefore, more research is needed in this field.

摘要

越来越多的囊性纤维化(CF)患者存活至成年期。因此,了解成人和青少年CF患者的精神和心理社会状况比以往任何时候都更加重要。有大量证据表明,在疾病变得严重之前,CF患者的心理和心理社会功能与健康人相似。然而,也有证据表明,患者确实更容易出现精神问题,如抑郁症,并且在生活质量的身体功能指标上得分较低。关于呼吸功能损害程度与心理功能之间的任何关联,研究得出了相互矛盾的证据。应对方式似乎对CF患者的生活质量有很大影响。囊性纤维化患者在性、柏拉图式关系和独立性方面可能会有问题。患者的家庭也会遭受问题,这可能会影响患者自身。不遵医嘱对许多患者来说是一个复杂的问题。针对CF患者的新治疗方法正在出现,如实体供体的肺叶移植和基因治疗,可能会引发新的心理社会问题。此外,随着治疗和预后的变化,早期的研究越来越不适用。因此,该领域需要更多的研究。

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