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[1型神经纤维瘤病患者情绪调节问题的治疗]

[Treatment of emotion regulation problems in people with neurofibromatosis type 1].

作者信息

van Leeuwen J P A, Urganci Y, Ossewaarde L, Boumans C E, C van den Bosch L M, Egger J I M

出版信息

Tijdschr Psychiatr. 2024;66(6):331-335.

Abstract

Individuals with the genetic disorder neurofibromatosis type 1 (NF1) are typically diagnosed in a medical hospital setting strongly relying on the presence of well-defined physical symptoms such as neurofibromas or pigmentary spots (known as café-au-lait spots). In mental health care settings, however, aside from a few highly specialized centres, the diagnosis and treatment of individuals with NF1 receives little attention, while the need for psychological treatment is increasingly identified, both in clinical practice and in the scientific literature. Occasional referrals of individuals with NF1 to the mental health services are often only targeted at psychological assessment. Subsequent treatment, however, is usually lacking. We describe two individuals with NF1 for whom by means of specialized clinical neuropsychological assessment, participation in a tailored dialectical behavior therapy (DBT) skills training was indicated. We exposit how they were able to develop their skills and how they themselves and their significant others experienced the treatment.

摘要

患有1型神经纤维瘤病(NF1)这种遗传性疾病的个体通常是在医疗医院环境中被诊断出来的,这很大程度上依赖于明确的身体症状,如神经纤维瘤或色素沉着斑(即牛奶咖啡斑)。然而,在精神卫生保健环境中,除了少数高度专业化的中心外,NF1患者的诊断和治疗很少受到关注,而在临床实践和科学文献中,对心理治疗的需求却越来越受到认可。偶尔将NF1患者转介到精神卫生服务机构往往仅针对心理评估。然而,后续治疗通常缺失。我们描述了两名NF1患者,通过专门的临床神经心理学评估表明他们适合参加量身定制的辩证行为疗法(DBT)技能培训。我们阐述了他们如何能够培养自身技能,以及他们自己和他们的重要他人对治疗的体验。

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