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孕前囊性纤维化携带者筛查:目标人群的态度和意愿

Preconceptional cystic fibrosis carrier screening: attitudes and intentions of the target population.

作者信息

Poppelaars Francis A M, Henneman Lidewij, Adèr Herman J, Cornel Martina C, Hermens Rosella P M G, van der Wal Gerrit, ten Kate Leo P

机构信息

Department of Clinical Genetics, VU University Medical Center, Amsterdam.

出版信息

Genet Test. 2004 Summer;8(2):80-9. doi: 10.1089/gte.2004.8.80.

Abstract

The aim of this study was to assess the attitudes and intentions of individuals planning a pregnancy with regard to preconceptional cystic fibrosis (CF) carrier screening and to determine factors associated with a positive and negative/neutral intention to have the test. A survey, based on a questionnaire, was conducted among a stratified random sample of 303 recently married couples (606 individuals). Of the eligible individuals, 70% (n = 380) participated. Of the respondents, 73% had a positive attitude toward a routine offer of preconceptional CF carrier screening, and 56% had the intention to participate in a screening program. A positive intention to have the test was associated with high perceived anticipation of regret, intended preconceptional behavior, high perceived pressure from experts, high perceived consequences of the test results, low perceived barriers, and low perceived negative consequences for family members. These results suggest that the offer of routine preconceptional CF carrier screening would lead to substantial acceptance among couples planning a pregnancy. Several variables related with intention were identified.

摘要

本研究的目的是评估计划怀孕的个体对于孕前囊性纤维化(CF)携带者筛查的态度和意愿,并确定与进行该项检测的积极和消极/中立意愿相关的因素。基于一份问卷,对303对新婚夫妇(606名个体)的分层随机样本进行了调查。在符合条件的个体中,70%(n = 380)参与了调查。在受访者中,73%对常规提供孕前CF携带者筛查持积极态度,56%有意参与筛查项目。进行该项检测的积极意愿与对遗憾的高预期、孕前预期行为、来自专家的高感知压力、对检测结果的高感知后果、低感知障碍以及对家庭成员的低感知负面影响相关。这些结果表明,常规提供孕前CF携带者筛查将在计划怀孕的夫妇中获得广泛接受。确定了几个与意愿相关的变量。

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