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在针对患有神经纤维瘤病的成年人进行身心干预期间,社会支持调节生活质量结果。

Social support moderates quality of life outcomes during a mind-body intervention among adults with neurofibromatosis.

作者信息

Brewer Julie R, Hooker Julia E, Kanaya Millan, LaCamera Danielle E, Bakhshaie Jafar, Vranceanu Ana-Maria

机构信息

Department of Psychology, George Mason University, Fairfax, VA, 22030, USA.

Center for Health Outcomes and Interdisciplinary Research, Massachusetts General Hospital, Boston, MA, 02114, USA.

出版信息

J Neurooncol. 2025 Oct;175(1):133-141. doi: 10.1007/s11060-025-05108-8. Epub 2025 Aug 7.

Abstract

PURPOSE

Neurofibromatoses (NF; NF1, NF2-related schwannomatosis, and other forms) are incurable genetic disorders linked to poor quality of life (QoL). Limited research exists on social support as a protective factor for QoL in NF. This secondary analysis examined whether baseline social support moderates QoL outcomes in individuals with NF.

METHODS

Participants (N = 228, M=41.5, 75% female) were randomized to 3RP-NF (a mind-body resiliency intervention) or HEP-NF (control). Measures of social support and QoL (environmental, social, physical, psychological) were collected at baseline, post-test, and 12-month follow-up.

RESULTS

Individuals with higher baseline social support reported consistently higher QoL across both interventions, achieving clinically meaningful improvement, while those with low social support did not. No significant 3-way interactions were found between time, social support, and group from baseline to post-test (ps = 0.13-0.83) or follow-up (ps = 0.21-0.69). However, exploratory analyses showed a significant interaction between time and baseline social support for the 3RP-NF group in social, environmental, and psychological QoL at post-test (ps = 0.02-0.05), with a sustained effect at follow-up for social QoL (p = .01). No such effects were found in the HEP-NF group (ps = 0.25-0.68).

CONCLUSION

In adults with NF, baseline social support moderates social and environmental QoL in mind-body interventions. Enhancing social support early may particularly benefit individuals with initially low support, though further research is needed to identify effective strategies for achieving clinically meaningful changes.

TRIAL REGISTRATION

ClinicalTrials.gov Identifier NCT03406208. https://clinicaltrials.gov/study/NCT03406208.

摘要

目的

神经纤维瘤病(NF;与NF1、NF2相关的神经鞘瘤病及其他类型)是无法治愈的遗传性疾病,与生活质量(QoL)低下相关。关于社会支持作为NF患者生活质量保护因素的研究有限。本二次分析探讨了基线社会支持是否会调节NF患者的生活质量结果。

方法

参与者(N = 228,M = 41.5,75%为女性)被随机分为3RP-NF(一种身心弹性干预)或HEP-NF(对照组)。在基线、测试后和12个月随访时收集社会支持和生活质量(环境、社会、身体、心理)的测量数据。

结果

基线社会支持较高的个体在两种干预中均报告生活质量持续较高,并实现了具有临床意义的改善,而社会支持较低的个体则未实现。从基线到测试后(p值 = 0.13 - 0.83)或随访(p值 = 0.21 - 0.69),时间、社会支持和组间未发现显著的三因素交互作用。然而,探索性分析显示,在测试后,3RP-NF组的社会、环境和心理生活质量方面,时间与基线社会支持之间存在显著交互作用(p值 = 0.02 - 0.05),社会生活质量在随访时仍有持续效应(p = 0.01)。HEP-NF组未发现此类效应(p值 = 0.25 - 0.68)。

结论

在成年NF患者中,基线社会支持会调节身心干预中的社会和环境生活质量。早期加强社会支持可能对最初支持较低的个体特别有益,不过需要进一步研究以确定实现具有临床意义变化的有效策略。

试验注册

ClinicalTrials.gov标识符NCT03406208。https://clinicaltrials.gov/study/NCT03406208。

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