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遗传性和临床性肺纤维化筛查对无症状肺纤维化患者一级亲属的心理影响。

Psychological impact of genetic and clinical screening for pulmonary fibrosis on asymptomatic first-degree relatives of affected individuals.

机构信息

Division of Pulmonary Medicine, Department of Pediatrics, Boston Children's Hospital, Boston, Massachusetts, USA

BWH Pulmonary Genetics Center, Division of Pulmonary and Critical Care Medicine, Department of Medicine, Brigham and Women's Hospital, Boston, Massachusetts, USA.

出版信息

Thorax. 2021 Jun;76(6):621-623. doi: 10.1136/thoraxjnl-2020-216244. Epub 2021 Jan 22.

Abstract

Screening for pulmonary fibrosis may help to identify early stages of the disease. We assessed the psychological impact of screening undiagnosed first-degree relatives of patients with pulmonary fibrosis by administering two validated measures after participants received their results: the Decisional Regret Scale and the Feelings About genomiC Testing Results Questionnaire. More than 90% of relatives reported either no or mild decisional regret. Increased measures of decisional regret and negative feelings were present in those found to have a low diffusion capacity of carbon monoxide or interstitial lung abnormalities. Results of telomere length and genetic testing did not significantly impact regret.

摘要

筛查肺纤维化有助于发现疾病的早期阶段。我们通过在参与者收到结果后使用两种经过验证的测量方法来评估筛查肺纤维化患者未确诊的一级亲属的心理影响:决策后悔量表和基因检测结果问卷。超过 90%的亲属报告没有或仅有轻微的决策后悔。在发现一氧化碳扩散能力降低或间质肺异常的患者中,决策后悔和负面情绪的衡量标准增加。端粒长度和基因检测结果并未显著影响后悔。

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本文引用的文献

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Interstitial Lung Disease in Relatives of Patients with Pulmonary Fibrosis.肺纤维化患者亲属中的间质性肺病。
Am J Respir Crit Care Med. 2020 May 15;201(10):1240-1248. doi: 10.1164/rccm.201908-1571OC.
6
Validation of a decision regret scale.决策后悔量表的验证
Med Decis Making. 2003 Jul-Aug;23(4):281-92. doi: 10.1177/0272989X03256005.
7
Idiopathic pulmonary fibrosis.特发性肺纤维化
N Engl J Med. 2001 Aug 16;345(7):517-25. doi: 10.1056/NEJMra003200.

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