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一项远程医疗团体对改善 1 型神经纤维瘤病青少年同伴关系有效性的初步研究。

Pilot study of the effectiveness of a telehealth group for improving peer relationships for adolescents with neurofibromatosis type 1.

机构信息

Department of Psychology, University of Wisconsin- Milwaukee, 2441 E Hartford Ave, Wisconsin, 53211, Milwaukee, USA.

出版信息

Orphanet J Rare Dis. 2024 Mar 12;19(1):115. doi: 10.1186/s13023-024-03093-1.

DOI:10.1186/s13023-024-03093-1
PMID:38475852
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10935956/
Abstract

BACKGROUND

Interventions for social difficulties have not been investigated in the neurofibromatosis type 1 (NF1) population despite observations of elevated rates of social difficulties. In this pilot study, the effectiveness of a 14-week telehealth PEERS® intervention with nineteen adolescents with NF1 (M=13.79 years, SD = 1.32) with social skills difficulties was examined. Measures of social outcomes were completed at three timepoints (before, immediately after, and at 14-week follow-up).

RESULTS

Caregiver-reported social-emotional skills, social impairment, caregiver-reported number of adolescent get-togethers, and teen social knowledge showed significant improvement following the intervention.

CONCLUSIONS

The PEERS® intervention is promising to support the social and friendship skills of adolescents with NF1 who have social difficulties.

摘要

背景

尽管观察到神经纤维瘤病 1 型(NF1)患者的社交困难发生率较高,但针对社交困难的干预措施尚未在 NF1 人群中进行研究。在这项初步研究中,我们考察了一项为期 14 周的远程医疗 PEERS®干预措施对 19 名 NF1 青少年(M=13.79 岁,SD=1.32)社交技能困难的有效性。在三个时间点(干预前、干预后即刻和 14 周随访时)完成了社交结果的评估。

结果

干预后,照顾者报告的社交情感技能、社交障碍、照顾者报告的青少年聚会次数以及青少年社交知识均有显著改善。

结论

PEERS®干预措施有望为有社交困难的 NF1 青少年提供支持,帮助他们提高社交和友谊技能。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/08fd/10935956/62ee03733c60/13023_2024_3093_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/08fd/10935956/62ee03733c60/13023_2024_3093_Fig1_HTML.jpg
https://cdn.ncbi.nlm.nih.gov/pmc/blobs/08fd/10935956/62ee03733c60/13023_2024_3093_Fig1_HTML.jpg

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本文引用的文献

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Brief Report: A Pilot Study Examining the Effects of PEERS® for Adolescents Telehealth for Autistic Adolescents.简要报告:一项针对自闭症青少年的 PEERS® 青少年远程医疗效果的试点研究。
J Autism Dev Disord. 2022 Dec;52(12):5491-5499. doi: 10.1007/s10803-022-05666-0. Epub 2022 Jul 23.
2
Efficacy of PEERS® for Adolescents via Telehealth Delivery.远程医疗环境下 PEERS® 对青少年的疗效。
J Autism Dev Disord. 2022 Dec;52(12):5232-5242. doi: 10.1007/s10803-022-05580-5. Epub 2022 May 27.
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Program for the Education and Enrichment of Relational Skills for adolescents with an acquired brain injury: A randomized controlled trial.
针对后天性脑损伤青少年的关系技能教育与充实计划:一项随机对照试验。
Dev Med Child Neurol. 2022 Jun;64(6):771-779. doi: 10.1111/dmcn.15144. Epub 2022 Jan 28.
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Recommendations for Social Skills End Points for Clinical Trials in Neurofibromatosis Type 1.推荐用于神经纤维瘤病 1 型临床试验的社交技能终点。
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The impact of the COVID-19 pandemic on neurofibromatosis clinical care and research.新冠疫情对神经纤维瘤病临床护理和研究的影响。
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