Abstract

Objectives

The neurofibromatoses (NF) are rare, incurable genetic disorders. Adolescents with NF report greater stress and lower life satisfaction compared to same-age peers. We report on changes in life satisfaction and perceived stress following an 8-week single-blind, virtual randomized controlled trial of a mind–body intervention versus an educational control.

Methods

Adolescents (N = 51) completed measures at baseline, post-treatment (N = 45), and 6 months later (N = 39).

Results

Adolescents were geographically diverse, 41% female, and 76% White. Adolescents randomized to the intervention had greater improvements from baseline to post-test in stress compared to those in control; these were maintained through 6 months. Those randomized to intervention also reported greater improvement in life satisfaction from baseline to 6 months.

Conclusions

The NF tailored mind–body program resulted in sustained reduction in stress and improved life satisfaction. A virtual model of mind–body care may help adolescents who face other chronic medical illness.

中文翻译：

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患有神经纤维瘤病的有复原力的青年：在为期 8 周的虚拟身心干预后，可减少感知压力并提高生活满意度

摘要

目标

神经纤维瘤病 (NF) 是罕见的、无法治愈的遗传疾病。与同龄同龄人相比，患有 NF 的青少年报告更大的压力和更低的生活满意度。我们报告了在为期 8 周的单盲、虚拟随机对照试验（身心干预与教育控制）后生活满意度和感知压力的变化。

方法

青少年 ( N  = 51) 在基线、治疗后 ( N  = 45) 和 6 个月后 ( N  = 39) 完成了测量。

结果

青少年的地理分布多样，41% 为女性，76% 为白人。与对照组相比，随机接受干预的青少年在压力测试中从基线到测试后有更大的改善；这些都维持了6个月。那些随机接受干预的人还报告说，从基线到 6 个月的生活满意度有更大的改善。

结论

NF 量身定制的身心计划可以持续减轻压力并提高生活满意度。身心保健的虚拟模型可以帮助面临其他慢性疾病的青少年。