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本文引用的文献

1
Medical, welfare, and educational challenges and psychological distress in parents caring for an individual with 22q11.2 deletion syndrome: A cross-sectional survey in Japan.22q11.2 缺失综合征患儿父母的医疗、福利和教育挑战及心理困扰:日本的一项横断面调查。
Am J Med Genet A. 2022 Jan;188(1):37-45. doi: 10.1002/ajmg.a.62485. Epub 2021 Sep 3.
2
Neurodevelopmental Trajectories and Psychiatric Morbidity: Lessons Learned From the 22q11.2 Deletion Syndrome.神经发育轨迹与精神疾病发病率:从22q11.2缺失综合征中汲取的经验教训。
Curr Psychiatry Rep. 2021 Feb 24;23(3):13. doi: 10.1007/s11920-021-01225-z.
3
Affective and psychotic reactivity to daily-life stress in adults with 22q11DS: a study using the experience sampling method.22q11DS 成人对日常生活应激的情感和精神病性反应:使用经验采样法的研究。
J Neurodev Disord. 2020 Nov 13;12(1):30. doi: 10.1186/s11689-020-09333-2.
4
Toward co-production of research in 22q11.2 deletion syndrome: Research needs from the caregiver's perspective.迈向22q11.2缺失综合征研究的共同生产:照顾者视角下的研究需求
Psychiatry Clin Neurosci. 2020 Nov;74(11):626-627. doi: 10.1111/pcn.13141. Epub 2020 Sep 18.
5
Bullying and psychosis: The impact of chronic traumatic stress on psychosis risk in 22q11.2 deletion syndrome - a uniquely vulnerable population.欺凌和精神病:慢性创伤性应激对 22q11.2 缺失综合征精神病风险的影响——一个特别脆弱的人群。
J Psychiatr Res. 2019 Jul;114:99-104. doi: 10.1016/j.jpsychires.2019.04.011. Epub 2019 Apr 15.
6
What is new with 22q? An update from the 22q and You Center at the Children's Hospital of Philadelphia.22q 有什么新进展?费城儿童医院 22q 和 You 中心的最新消息。
Am J Med Genet A. 2018 Oct;176(10):2058-2069. doi: 10.1002/ajmg.a.40637.
7
Development of a 22q11DS psycho-educational programme: exploration of the views, concerns and educational needs of parents caring for children or adolescents with 22q11DS in relation to mental health issues.22q11 缺失综合征心理教育项目的开发:探讨照顾患有 22q11 缺失综合征的儿童或青少年的家长在心理健康问题方面的观点、担忧及教育需求。
Child Care Health Dev. 2017 Jul;43(4):527-535. doi: 10.1111/cch.12457. Epub 2017 Mar 30.
8
22q11.2 deletion syndrome.22q11.2 缺失综合征。
Nat Rev Dis Primers. 2015 Nov 19;1:15071. doi: 10.1038/nrdp.2015.71.
9
Practical guidelines for managing adults with 22q11.2 deletion syndrome.22q11.2缺失综合征成年患者管理实用指南。
Genet Med. 2015 Aug;17(8):599-609. doi: 10.1038/gim.2014.175. Epub 2015 Jan 8.
10
A tale worth telling: the impact of the diagnosis experience on disclosure of genetic disorders.一个值得讲述的故事:诊断经历对遗传性疾病披露的影响。
J Intellect Disabil Res. 2015 May;59(5):474-86. doi: 10.1111/jir.12151. Epub 2014 Jul 25.

22q11.2缺失综合征中的高特质焦虑与医疗、福利及教育服务方面的困难之间的关系

Relationship between high trait anxiety in 22q11.2 deletion syndrome and the difficulties in medical, welfare, and educational services.

作者信息

Nakajima Naomi, Tanaka Miho, Kanehara Akiko, Morishima Ryo, Kumakura Yousuke, Ohkouchi Noriko, Hamada Junko, Ogawa Tomoko, Tamune Hidetaka, Nakahara Mutsumi, Mori Shunsuke, Ichihashi Kayo, Jinde Seiichiro, Kano Yukiko, Sakamoto Ichiro, Tanaka Kyoko, Hirata Yoichiro, Ohashi Hirofumi, Shinohara Tokuko, Kasai Kiyoto

机构信息

Department of Neuropsychiatry The University of Tokyo Hospital Tokyo Japan.

The Health Care Science Institute Tokyo Japan.

出版信息

PCN Rep. 2023 Feb 13;2(1):e80. doi: 10.1002/pcn5.80. eCollection 2023 Mar.

DOI:10.1002/pcn5.80
PMID:38868412
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11114383/
Abstract

AIM

The 22q11.2 deletion syndrome (22q11DS) is associated with a high prevalence of mental health comorbidities. However, not enough attention has been paid to the elevated prevalence of high trait anxiety that begins early in life and may be enduring. We sought to identify specific medical, welfare, or educational difficulties associated with high trait anxiety in 22q11DS.

METHODS

A questionnaire-based survey was conducted for the parents of 22q11DS individuals ( = 125). First, a multiple regression analysis was conducted to confirm the hypothesis that high trait anxiety in individuals with 22q11DS would be associated with parents' psychological distress. This was based on 19 questionnaire options regarding what difficulties the parents currently face about their child's disease, characteristics, and traits. Next, we explored what challenges faced in medical, welfare, and educational services would be associated with the trait anxiety in their child.

RESULTS

The multiple regression analysis confirmed that the high trait anxiety was significantly associated with parental psychological distress ( = 0.265,  = 0.018) among the 19 clinical/personal characteristics of 22q11DS. Furthermore, this characteristic was associated with various difficulties faced in the medical care, welfare, and education services, and the parent-child relationship.

CONCLUSION

To our knowledge, this is the first study to clarify quantitatively how the characteristic of high anxiety level in 22q11DS individuals is related to the caregivers' perceived difficulties in medical, welfare, and educational services. These results suggest the necessity of designing service structures informed of the fact that high trait anxiety is an important clinical feature of the syndrome.

摘要

目的

22q11.2缺失综合征(22q11DS)与心理健康合并症的高患病率相关。然而,对于始于生命早期且可能持续存在的高特质焦虑患病率升高问题,尚未给予足够关注。我们试图确定与22q11DS中高特质焦虑相关的特定医疗、福利或教育困难。

方法

对125名22q11DS个体的父母进行了问卷调查。首先,进行多元回归分析以证实22q11DS个体的高特质焦虑与父母心理困扰相关的假设。这是基于19个关于父母目前在孩子疾病、特征和特质方面面临哪些困难的问卷选项。接下来,我们探讨了医疗、福利和教育服务中面临的哪些挑战与孩子的特质焦虑相关。

结果

多元回归分析证实,在22q11DS的19项临床/个人特征中,高特质焦虑与父母心理困扰显著相关(β = 0.265,p = 0.018)。此外,这一特征与医疗、福利和教育服务以及亲子关系中面临的各种困难相关。

结论

据我们所知,这是第一项定量阐明22q11DS个体高焦虑水平特征如何与照顾者在医疗、福利和教育服务中感知到的困难相关的研究。这些结果表明,有必要设计服务结构,充分认识到高特质焦虑是该综合征的一个重要临床特征。