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Cancer genetic counseling for childhood cancer predisposition is associated with improved levels of knowledge and high satisfaction in parents
Journal of Genetic Counseling ( IF 1.9 ) Pub Date : 2020-11-12 , DOI: 10.1002/jgc4.1357
Olivia A Juarez 1 , Bojana B Pencheva 1, 2 , Cecelia Bellcross 1 , Kami W Schneider 3 , Joyce Turner 4 , Christopher C Porter 1, 2
Affiliation  

Previous surveys of adults with cancer have revealed increased levels of genetic knowledge, varying levels of worry, and high satisfaction with cancer genetic counseling. We sought to determine the impact of cancer genetic counseling on parental levels of genetic knowledge, worry about cancer, and satisfaction in the context of suspected cancer predisposition in a child. We hypothesized that parents would be satisfied with cancer genetic counseling and that cancer genetic counseling would improve baseline parental genetic knowledge and decrease levels of worry. Parents were recruited from a pediatric cancer predisposition clinic in the United States. A survey was administered to two cohorts: One cohort had received cancer genetic counseling in the past and only completed one survey (post-only, n = 26), and another cohort completed the survey before and after cancer genetic counseling (pre/post, n = 23). The survey included questions on demographics, knowledge of genetics, worry levels, and satisfaction with the cancer genetic counseling service. The post-genetic counseling survey also contained a free-text section for parents to indicate what they took away from the sessions. Parental levels of genetics knowledge increased by an average of 1.9 points (p = .01), with 65.2% of parents demonstrating an increase in genetics knowledge score. Average worry levels did not change significantly (p = .37), with 52.2% of parents indicating decreased worry, and 34.8% indicating increased worry. Overall, 91.8% of parents reported high levels of satisfaction. Our results show that cancer genetic counseling in a pediatric cancer predisposition clinic improves parental levels of genetics knowledge. Satisfaction rates suggest that parents find this service beneficial. These results demonstrate the positive impacts of cancer genetic counseling on parents of children in which a hereditary cancer syndrome is known or suspected.

中文翻译:

针对儿童癌症易感性的癌症遗传咨询与父母知识水平的提高和高满意度有关

以前对患有癌症的成年人的调查显示,遗传知识水平提高,担忧程度不同,对癌症遗传咨询的满意度也很高。我们试图确定癌症遗传咨询对父母遗传知识水平、对癌症的担忧以及在儿童疑似癌症倾向的情况下的满意度的影响。我们假设父母会对癌症遗传咨询感到满意,并且癌症遗传咨询会提高父母的基线遗传知识并降低担忧程度。父母是从美国的一家儿科癌症易感诊所招募的。对两个队列进行了一项调查:一个队列过去接受过癌症遗传咨询,并且只完成了一项调查(仅后期,n = 26),另一个队列在癌症遗传咨询之前和之后完成了调查(前/后,n  = 23)。该调查包括人口统计学、遗传学知识、担忧程度以及对癌症遗传咨询服务的满意度等问题。后遗传咨询调查还包含一个自由文本部分,供父母说明他们从会议中学到了什么。父母的遗传知识水平平均提高了 1.9 分 ( p  = .01),65.2% 的父母表现出遗传知识得分的提高。平均担心水平没有显着变化(p = .37),52.2% 的父母表示担心减少,34.8% 表示担心增加。总体而言,91.8% 的家长表示满意。我们的结果表明,儿童癌症易感诊所的癌症遗传咨询提高了父母的遗传知识水平。满意度表明父母认为这项服务是有益的。这些结果表明癌症遗传咨询对已知或怀疑患有遗传性癌症综合征的儿童的父母有积极影响。
更新日期:2020-11-12
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