Newborn screening for cystic fibrosis - The parent perspective
Newborn screening for cystic fibrosis - The parent perspective
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DOI：
10.1016/j.jcf.2015.12.003
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发表时间：
2016-07-01
影响因子：
5.2
通讯作者：
Kuehni, Claudia E.
中科院分区：
文献类型：
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作者：
Rueegg, Corina S.;Barben, Jurg;Kuehni, Claudia E.
背景：2011年1月在瑞士开始新生儿CF筛查。我们调查了家长的意见收到的信息，他们的感受，和整体批准的screening.Methods：这是一个前瞻性的问卷调查，所有家长的积极筛选儿童。CF中心打电话给父母，并邀请他们进行诊断调查。结果：从2011年至2013年，共有246个家庭收到了调查问卷，其中138个家庭（56%）做出了回答。其中，77人（60%）认为出生时收到的信息令人满意; 124人（91%）认为CF中心提供的信息令人满意。大多数家长（n = 98，78%）感到困扰或焦虑时，CF中心呼吁，51（38%）仍然焦虑的访问后。大多数家长（n = 122; 88%）是满意的筛选，4（3%）没有，12（9%）是不确定的。结论：顺利组织的筛选过程中，个人信息的CF专家和这个信息和最终的诊断测试之间的短时间延迟，可能有助于减少父母之间的焦虑。大多数家庭都很感激他们的孩子接受了筛查，并对这个过程感到满意。(C)2015年欧洲囊性纤维化协会。Elsevier B. V.出版，保留所有权利。
Background: Newborn screening for CF started 01/2011 in Switzerland. We investigated the parents' opinions about the information received, their feelings, and overall approval of the screening.Methods: This is a prospective questionnaire survey of all parents of positively screened children. Parents were phoned by CF-centres and invited for diagnostic investigations. They completed a questionnaire after the visit to the CF-centre.Results: From 2011-2013, 246 families received the questionnaire and 138 (56%) replied. Of these 77 (60%) found the information received at birth satisfactory; 124 (91%) found the information provided in the CF-centre satisfactory. Most parents (n = 98, 78%) felt troubled or anxious when the CF-centre called, 51 (38%) remained anxious after the visit. Most parents (n = 122; 88%) were satisfied with the screening, 4 (3%) were not, and 12 (9%) were unsure.Conclusions: The smooth organisation of the screening process, with personal information by a CF specialist and short delays between this information and the final diagnostic testing, might have contributed to reduce anxiety among parents. Most families were grateful that their child had been screened, and are happy with the process. (C) 2015 European Cystic Fibrosis Society. Published by Elsevier B.V. All rights reserved.