Neurofibromatosis type 1 (NF1) is a genetic condition characterized by various cutaneous, neurological and psychological manifestations. The present study examined whether parental knowledge of NF1 is associated with a parent's NF1 status, affected or unaffected, and exposure to genetic counseling. Parents of children with NF1 were invited to complete an online survey answering true or false and multiple‐choice questions to evaluate their overall knowledge of NF1. The study included 274 respondents, of which NF1 knowledge scores were significantly higher for unaffected parents (p < .001), and for parents who reported previously meeting with a genetic counselor (p < .001). Items pertaining to NF1‐related cancer were least likely to be answered correctly. The results of the current study revealed lower overall NF1 knowledge in affected parents and knowledge gaps identifying areas where focused NF1 education may be beneficial.

中文翻译：

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与父母对1型神经纤维瘤病（NF1）的了解有关的因素：父母的患病状况和遗传咨询

1型神经纤维瘤病（NF1）是一种遗传病，具有多种皮肤，神经和心理表现。本研究调查了父母对NF1的了解是否与父母的NF1状况（受影响或未受影响）以及接受遗传咨询有关。邀请患有NF1的孩子的父母完成一项在线调查，回答是非题和多项选择题，以评估他们对NF1的整体知识。该研究共纳入274名受访者中，其中NF1知识得分均高于显著为父母的影响（p  <0.001），并为家长谁报告之前与遗传咨询师会（p <.001）。与NF1相关的癌症相关的项目最不可能正确回答。当前研究的结果表明，受影响的父母的总NF1知识水平较低，并且知识缺口确定了重点NF1教育可能有益的领域。