• 文献检索
  • 文档翻译
  • 深度研究
  • 学术资讯
  • Suppr Zotero 插件Zotero 插件
  • 邀请有礼
  • 套餐&价格
  • 历史记录
应用&插件
Suppr Zotero 插件Zotero 插件浏览器插件Mac 客户端Windows 客户端微信小程序
定价
高级版会员购买积分包购买API积分包
服务
文献检索文档翻译深度研究API 文档MCP 服务
关于我们
关于 Suppr公司介绍联系我们用户协议隐私条款
关注我们

Suppr 超能文献

核心技术专利:CN118964589B侵权必究
粤ICP备2023148730 号-1Suppr @ 2026

文献检索

告别复杂PubMed语法,用中文像聊天一样搜索,搜遍4000万医学文献。AI智能推荐,让科研检索更轻松。

立即免费搜索

文件翻译

保留排版,准确专业,支持PDF/Word/PPT等文件格式,支持 12+语言互译。

免费翻译文档

深度研究

AI帮你快速写综述,25分钟生成高质量综述,智能提取关键信息,辅助科研写作。

立即免费体验

1型神经纤维瘤病成年患者的抑郁症:患病率及其对生活质量的影响。

Depression among adults with neurofibromatosis type 1: prevalence and impact on quality of life.

作者信息

Cohen J S, Levy H P, Sloan J, Dariotis J, Biesecker B B

机构信息

Department of Neurology and Developmental Medicine, Kennedy Krieger Institute, Baltimore, MD, USA.

McKusick Nathans Institute of Genetic Medicine and Division of General Internal Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, USA.

出版信息

Clin Genet. 2015 Nov;88(5):425-30. doi: 10.1111/cge.12551. Epub 2015 Jan 20.

DOI:10.1111/cge.12551
PMID:25534182
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4573679/
Abstract

Neurofibromatosis type 1 (NF1) carries a significant psychosocial burden for affected individuals. The objective of this study was to measure the prevalence of depressive symptoms among a large sample of adults with NF1 and to quantify the impact of depressive symptoms on quality of life (QoL). This cross-sectional study used an Internet-based questionnaire to collect data from 498 adults who self-reported as having NF1. Using the Center for Epidemiologic Studies Depression (CESD) scale, 55% of all participants (61% of females and 43% of males) scored above 16, indicating a high likelihood of clinical depression. In a multivariate regression model controlling for demographics and potential confounders, depressive symptoms accounted for 32% of the variance in QoL as measured by the Quality of Life Index. This study is the largest to date and found the highest prevalence of depression compared to prior studies. Our data provide more compelling evidence that individuals with NF1 are at increased risk for psychiatric morbidity and suggest that this population should be routinely screened for depression. Because depression was found to be strongly associated with QoL and accounted for nearly one-third of the variance in QoL, it is likely that effectively treating depression may significantly enhance QoL for individuals with NF1.

摘要

1型神经纤维瘤病(NF1)给患者带来了巨大的心理社会负担。本研究的目的是测量一大群成年NF1患者中抑郁症状的患病率,并量化抑郁症状对生活质量(QoL)的影响。这项横断面研究使用基于互联网的问卷,从498名自我报告患有NF1的成年人中收集数据。使用流行病学研究中心抑郁量表(CESD),所有参与者中有55%(女性为61%,男性为43%)得分高于16,表明临床抑郁症的可能性很高。在控制人口统计学和潜在混杂因素的多变量回归模型中,抑郁症状占生活质量指数所衡量的生活质量差异的32%。这项研究是迄今为止规模最大的,与之前的研究相比,发现抑郁症的患病率最高。我们的数据提供了更有说服力的证据,表明NF1患者患精神疾病的风险增加,并表明该人群应常规筛查抑郁症。由于发现抑郁症与生活质量密切相关,且占生活质量差异的近三分之一,有效治疗抑郁症可能会显著提高NF1患者的生活质量。

相似文献

1
Depression among adults with neurofibromatosis type 1: prevalence and impact on quality of life.1型神经纤维瘤病成年患者的抑郁症:患病率及其对生活质量的影响。
Clin Genet. 2015 Nov;88(5):425-30. doi: 10.1111/cge.12551. Epub 2015 Jan 20.
2
Clinical characteristics and quality of life, depression, and anxiety in adults with neurofibromatosis type 1: A nationwide study.神经纤维瘤病 1 型成人的临床特征、生活质量、抑郁和焦虑:一项全国性研究。
Am J Med Genet A. 2020 Jul;182(7):1704-1715. doi: 10.1002/ajmg.a.61627. Epub 2020 Jun 2.
3
Evaluation of quality of life in adults with neurofibromatosis 1 (NF1) using the Impact of NF1 on Quality Of Life (INF1-QOL) questionnaire.使用1型神经纤维瘤病(NF1)对生活质量的影响(INF1-QOL)问卷评估成年NF1患者的生活质量。
Health Qual Life Outcomes. 2017 Feb 14;15(1):34. doi: 10.1186/s12955-017-0607-y.
4
The impact of cutaneous neurofibromas on quality of life and mental health in neurofibromatosis type 1.1型神经纤维瘤病中皮肤神经纤维瘤对生活质量和心理健康的影响。
J Dermatol. 2024 Aug;51(8):1050-1059. doi: 10.1111/1346-8138.17276. Epub 2024 Jun 24.
5
Association of sociodemographic and clinical factors with the quality of life of Brazilian individuals with Neurofibromatosis type 1: a cross-sectional study.社会人口学和临床因素与巴西 1 型神经纤维瘤病患者生活质量的关系:一项横断面研究。
An Bras Dermatol. 2024 Jul-Aug;99(4):520-526. doi: 10.1016/j.abd.2023.08.011. Epub 2024 Mar 16.
6
Dysfunctional coping is related to impaired skin-related quality of life and psychological distress in patients with neurofibromatosis type 1 with major skin involvement.功能失调性应对方式与1型神经纤维瘤病且有严重皮肤受累患者的皮肤相关生活质量受损及心理困扰有关。
Br J Dermatol. 2020 Jun;182(6):1449-1457. doi: 10.1111/bjd.18363. Epub 2019 Oct 16.
7
Relationship between whole-body tumor burden, clinical phenotype, and quality of life in patients with neurofibromatosis.神经纤维瘤病患者全身肿瘤负担、临床表型与生活质量的关系。
Am J Med Genet A. 2014 Jun;164A(6):1431-7. doi: 10.1002/ajmg.a.36466. Epub 2014 Mar 24.
8
Cutaneous Neurofibromas and Quality of Life in Adults With Neurofibromatosis Type 1.皮肤神经纤维瘤和 1 型神经纤维瘤病患者的生活质量。
JAMA Dermatol. 2024 Oct 1;160(10):1091-1098. doi: 10.1001/jamadermatol.2024.2912.
9
Quality of Life in Adults with Neurofibromatosis 1 in Brazil.巴西1型神经纤维瘤病成人患者的生活质量
J Genet Couns. 2016 Oct;25(5):1063-74. doi: 10.1007/s10897-016-9939-8. Epub 2016 Mar 5.
10
Impact of neurofibromatosis type 1 on quality of life using the Skindex-29 questionnaire quality of life in NF1.神经纤维瘤病 1 型对生活质量的影响,使用 Skindex-29 问卷评估 NF1 患者的生活质量。
Orphanet J Rare Dis. 2024 Feb 24;19(1):85. doi: 10.1186/s13023-024-03078-0.

引用本文的文献

1
Psychosocial functioning and determinants of the health-related quality of life in children with neurofibromatosis type 1 and cognitive impairments.1型神经纤维瘤病伴认知障碍儿童的心理社会功能及健康相关生活质量的决定因素
J Neurooncol. 2025 Jun 5. doi: 10.1007/s11060-025-05024-x.
2
Family history does not influence stress or major coping styles in adults with neurofibromatosis type 1.家族病史不会影响1型神经纤维瘤病成年患者的压力或主要应对方式。
J Genet Couns. 2025 Jun;34(3):e70052. doi: 10.1002/jgc4.70052.
3
Neurofibromatosis type 1 is associated with neurocognitive and psychiatric disorders in a national database.在一个国家数据库中,1型神经纤维瘤病与神经认知和精神障碍相关。
Arch Dermatol Res. 2025 May 6;317(1):749. doi: 10.1007/s00403-025-04250-7.
4
Cutaneous and noncutaneous features in patients with neurofibromatosis type 1: A retrospective cohort study including 644 patients.1型神经纤维瘤病患者的皮肤和非皮肤特征:一项纳入644例患者的回顾性队列研究。
JAAD Int. 2024 Apr 21;18:46-47. doi: 10.1016/j.jdin.2024.03.010. eCollection 2025 Feb.
5
Long-term distress throughout one's life: health-related quality of life, economic and caregiver burden of patients with neurofibromatosis type 1 in China.中国人患神经纤维瘤病 1 型的长期困扰:与健康相关的生活质量、经济和照顾者负担。
Front Public Health. 2024 Aug 21;12:1398803. doi: 10.3389/fpubh.2024.1398803. eCollection 2024.
6
The impact of cutaneous neurofibromas on quality of life and mental health in neurofibromatosis type 1.1型神经纤维瘤病中皮肤神经纤维瘤对生活质量和心理健康的影响。
J Dermatol. 2024 Aug;51(8):1050-1059. doi: 10.1111/1346-8138.17276. Epub 2024 Jun 24.
7
Endocrine and non-endocrine causes of fatigue in adults with Neurofibromatosis type 1.成年 1 型神经纤维瘤病患者疲劳的内分泌和非内分泌原因。
Front Endocrinol (Lausanne). 2024 Mar 15;14:1119159. doi: 10.3389/fendo.2023.1119159. eCollection 2023.
8
Impact of neurofibromatosis type 1 on quality of life using the Skindex-29 questionnaire quality of life in NF1.神经纤维瘤病 1 型对生活质量的影响,使用 Skindex-29 问卷评估 NF1 患者的生活质量。
Orphanet J Rare Dis. 2024 Feb 24;19(1):85. doi: 10.1186/s13023-024-03078-0.
9
Perceived transition readiness among adolescents and young adults with neurofibromatosis type 1 and plexiform neurofibromas: a cross-sectional descriptive study.1型神经纤维瘤病和丛状神经纤维瘤青少年及青年患者对过渡准备状态的认知:一项横断面描述性研究
J Pediatr Psychol. 2024 Jun 13;49(6):383-391. doi: 10.1093/jpepsy/jsae006.
10
Perspectives of adults with neurofibromatosis regarding the design of psychosocial trials: Results from an anonymous online survey.神经纤维瘤病患者对心理社会临床试验设计的看法:一项匿名在线调查的结果。
Clin Trials. 2024 Feb;21(1):73-84. doi: 10.1177/17407745231209224. Epub 2023 Nov 14.

本文引用的文献

1
Physical, cognitive, and psychosocial predictors of functional disability and health-related quality of life in adolescents with neurofibromatosis-1.1型神经纤维瘤病青少年功能残疾及健康相关生活质量的身体、认知和社会心理预测因素
Pain Res Treat. 2012;2012:975364. doi: 10.1155/2012/975364. Epub 2012 Sep 26.
2
Emotional functioning of patients with neurofibromatosis tumor suppressor syndrome.神经纤维瘤病肿瘤抑制综合征患者的情绪功能。
Genet Med. 2012 Dec;14(12):977-82. doi: 10.1038/gim.2012.85. Epub 2012 Aug 9.
3
Psychological burden in adult neurofibromatosis type 1 patients: impact of disease visibility on body image.成年 1 型神经纤维瘤病患者的心理负担:疾病可见性对身体形象的影响。
Dermatology. 2012;224(2):160-7. doi: 10.1159/000337548. Epub 2012 Apr 12.
4
Quality of life in rare genetic conditions: a systematic review of the literature.罕见遗传疾病患者的生活质量:文献系统评价。
Am J Med Genet A. 2010 May;152A(5):1136-56. doi: 10.1002/ajmg.a.33380.
5
Health-related quality of life in patients with neurofibromatosis type 1. A survey of 129 Italian patients.1型神经纤维瘤病患者的健康相关生活质量。对129名意大利患者的调查。
Dermatology. 2009;218(3):215-20. doi: 10.1159/000187594. Epub 2008 Dec 17.
6
Impact of neurofibromatosis 1 upon quality of life in childhood: a cross-sectional study of 79 cases.神经纤维瘤病1型对儿童生活质量的影响:79例横断面研究。
Br J Dermatol. 2009 Apr;160(4):844-8. doi: 10.1111/j.1365-2133.2008.08949.x. Epub 2008 Dec 5.
7
Health-related quality of life in children with neurofibromatosis type 1: contribution of demographic factors, disease-related factors, and behavior.1型神经纤维瘤病患儿的健康相关生活质量:人口统计学因素、疾病相关因素及行为的作用
J Pediatr. 2009 Mar;154(3):420-5, 425.e1. doi: 10.1016/j.jpeds.2008.08.045. Epub 2008 Oct 31.
8
Parental reports of health-related quality of life in young children with neurofibromatosis type 1: influence of condition specific determinants.1型神经纤维瘤病幼儿父母报告的健康相关生活质量:疾病特异性决定因素的影响
J Pediatr. 2007 Aug;151(2):182-6, 186.e1-2. doi: 10.1016/j.jpeds.2007.03.005.
9
Neurofibromatosis type 1 in genetic counseling practice: recommendations of the National Society of Genetic Counselors.遗传咨询实践中的1型神经纤维瘤病:美国国家遗传咨询师协会的建议
J Genet Couns. 2007 Aug;16(4):387-407. doi: 10.1007/s10897-007-9101-8. Epub 2007 Jul 17.
10
Guidelines for the diagnosis and management of individuals with neurofibromatosis 1.1型神经纤维瘤病患者的诊断和管理指南。
J Med Genet. 2007 Feb;44(2):81-8. doi: 10.1136/jmg.2006.045906. Epub 2006 Nov 14.