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培养神经纤维瘤病 2 型耳聋或重度听力损失患者的适应力:一项现场视频随机对照试验。

Cultivating resiliency in patients with neurofibromatosis 2 who are deafened or have severe hearing loss: a live‑video randomized control trial.

机构信息

Integrated Brain Health Clinical and Research Program, Department of Psychiatry, Massachusetts General Hospital/Harvard Medical School, One Bowdoin Square, 1st Floor, Suite 100, Boston, USA.

Harvard Medical School, Boston, USA.

出版信息

J Neurooncol. 2019 Dec;145(3):561-569. doi: 10.1007/s11060-019-03326-5. Epub 2019 Nov 1.

DOI:10.1007/s11060-019-03326-5
PMID:31677033
Abstract

INTRODUCTION

Patients with NF2 who are deaf or have significant hearing loss face numerous and unique challenges which lead to poor quality of life, and thus may benefit from resiliency programs.

METHODS

We performed secondary data analyses on a single blind, randomized controlled trial of an 8 week mind-body resiliency program (the Relaxation Response and Resiliency program for Deaf NF2; d3RP-NF2) versus a health education control (Health Enhancement Program for Deaf NF2;dHEP-NF2) which showed improvement in quality of life (Funes in JAMA 2019, https://doi.org/10.1007/s11060-019-03182-3). Here we report on improvements in resiliency factors (i.e. optimism, gratitude, perceived social support, mindfulness, and perceived coping abilities) assessed at baseline, post-test and 6-month follow-up. Both programs were delivered via Skype using Communication Access Real-Time Translation.

RESULTS

Patients who were randomized to the d3RP-NF2 program exhibited significant improvements from baseline to post-program in gratitude (M = 4.04, 95% CI 1.58-6.50; p = 0.002), perceived social support (M = 16.36, 95% CI 9.20-23.51; p < 0.001), mindfulness (M = 4.02, 95% CI 1.10-6.94; p = 0.008), perceived coping (M = 15.25, 95% CI 10.21-20.28; p < 0.001), and a non-significant trend of improvement in optimism (M = 1.15, 95% CI -0.14-12.44; p = 0.079). These improvements were all maintained through the 6-month follow up. Improvements in perceived coping (M = 12.34, 95% CI 4.75-19.93; p = 0.002), social support (M = 13.11, 95% CI 2.19-24.03; p = 0.02), and gratitude (M = 4.59, 95% CI 0.83-8.36; p = 0.018) were over and above the changes observed in those randomized to dHEP-NF2.

CONCLUSION

The d3RP-NF2 sustainably improves multiple dimensions of resiliency. Promoting resiliency may be of utmost importance for this uderserved population.

摘要

简介

患有 NF2 且失聪或有明显听力损失的患者面临着许多独特的挑战,这些挑战导致生活质量下降,因此他们可能受益于弹性计划。

方法

我们对一项为期 8 周的身心弹性计划(聋人 NF2 的放松反应和弹性计划;d3RP-NF2)与健康教育培训对照(聋人 NF2 的健康增强计划;dHEP-NF2)的单盲、随机对照试验进行了二次数据分析,该试验显示生活质量有所改善(Funes 在 JAMA 2019 年,https://doi.org/10.1007/s11060-019-03182-3)。在这里,我们报告了在基线、后测和 6 个月随访时评估的弹性因素(即乐观、感激、感知社会支持、正念和感知应对能力)的改善情况。两个项目都通过 Skype 使用实时翻译进行交流。

结果

随机分配到 d3RP-NF2 方案的患者在感恩(M=4.04,95%CI 1.58-6.50;p=0.002)、感知社会支持(M=16.36,95%CI 9.20-23.51;p<0.001)、正念(M=4.02,95%CI 1.10-6.94;p=0.008)、感知应对能力(M=15.25,95%CI 10.21-20.28;p<0.001)方面均有显著改善,乐观(M=1.15,95%CI-0.14-12.44;p=0.079)呈非显著改善趋势。这些改善在 6 个月的随访中均得到维持。感知应对能力(M=12.34,95%CI 4.75-19.93;p=0.002)、社会支持(M=13.11,95%CI 2.19-24.03;p=0.02)和感恩(M=4.59,95%CI 0.83-8.36;p=0.018)的改善均超过了随机分配到 dHEP-NF2 组的变化。

结论

d3RP-NF2 可持续改善多个维度的弹性。促进弹性对于这个服务不足的群体可能至关重要。

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J Neurooncol. 2018 Apr;137(2):321-329. doi: 10.1007/s11060-017-2720-5. Epub 2017 Dec 23.
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