父母对肿瘤分子谱分析和种系基因检测在孩子癌症治疗中的应用的看法。

IF 2 4区 医学 Q3 GENETICS & HEREDITY
Marcelo M Sleiman, Muriel R Statman, Mary Rose Yockel, Yelena P Wu, Jada G Hamilton, Wendy K Kohlmann, Jennie Vagher, Soren Feola, Luke D Maese, Jing Chen, Burton Appel, Casey J Mehrhoff, Beth N Peshkin, Nina S Kadan-Lottick, Gary M Kupfer, Kenneth P Tercyak
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引用次数: 0

摘要

肿瘤分子谱(TMP)与种系基因检测(GGT)正在成为儿科癌症护理的标准做法。然而,对于父母对这些做法的理解,或者测试的社会心理风险和益处,我们知之甚少。本研究描述了父母对TMP和GGT的知识、态度和信念。一项横断面、混合方法的研究在N = 75名癌症儿童的父母中进行。家长们完成了一份关于癌症相关知识、对GGT的态度、心理压力、沟通和决策的调查。然后,一个子集(N = 31, 41%)完成了关于TMP和GGT的访谈,这些访谈是根据调查结果进行内容编码和解释的。相关分析表明,家长对癌症和遗传学的更多了解与GGT的良好态度(r = 0.34)、对GGT结果的更多信息的偏好(r = 0.56)和对GGT决策后悔的减少(r = -0.61)相关。较少公开交流的家庭对GGT的看法更有利(r = -0.38),并希望获得更多关于GGT的信息(r = -0.39),但他们的孩子更焦虑(r = -0.36)。更焦虑的父母(r = 0.40)和更喜欢GGT的父母(r = 0.41)也有更焦虑的孩子(均为p)
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Parental perspectives on the use of tumor molecular profiling and germline genetic testing during their children's cancer treatment.

Tumor molecular profiling (TMP) with germline genetic testing (GGT) is becoming standard practice in pediatric cancer care. Yet, little is known about parents' understanding of these practices, or testing's psychosocial risks and benefits. This study characterized parental knowledge, attitudes, and beliefs about TMP and GGT. A cross-sectional, mixed-methods study was conducted among N = 75 parents of children with cancer. Parents completed a survey on cancer-related knowledge, attitudes toward GGT, psychological stress, communication, and decision-making. A subset (N = 31, 41%) then completed interviews about TMP and GGT that were content-coded and interpreted in light of survey findings. Correlative analyses indicated that parents' greater understanding of cancer and genetics was associated with favorable attitudes toward GGT (r = 0.34), preferences for more information about GGT results (r = 0.56) and reduced decisional regret about GGT (r = -0.61). Families who communicated less openly held more favorable views on GGT (r = -0.38) and preferred more information about GGT (r = -0.39), but had children who were more anxious (r = -0.36). Parents who were more anxious (r = 0.40) and who favored GGT (r = 0.41) also had children who were more anxious (all p's < 0.05). Thematically, most parents recalled their children's test results (94%), but recollection of testing type was suboptimal (58% for TMP, 61% for GGT). Nearly 70% believed it would be helpful to speak to other families for psychosocial support; additional potential resources included healthcare providers (31%) and websites (23%). When children with cancer undergo TMP and/or GGT, their parents would benefit psychoeducational resources to improve outcomes.

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来源期刊
Familial Cancer
Familial Cancer 医学-遗传学
CiteScore
4.10
自引率
4.50%
发文量
36
审稿时长
6-12 weeks
期刊介绍: In recent years clinical cancer genetics has become increasingly important. Several events, in particular the developments in DNA-based technology, have contributed to this evolution. Clinical cancer genetics has now matured to a medical discipline which is truly multidisciplinary in which clinical and molecular geneticists work together with clinical and medical oncologists as well as with psycho-social workers. Due to the multidisciplinary nature of clinical cancer genetics most papers are currently being published in a wide variety of journals on epidemiology, oncology and genetics. Familial Cancer provides a forum bringing these topics together focusing on the interests and needs of the clinician. The journal mainly concentrates on clinical cancer genetics. Most major areas in the field shall be included, such as epidemiology of familial cancer, molecular analysis and diagnosis, clinical expression, treatment and prevention, counselling and the health economics of familial cancer.
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