Johannessen Jarle, Nærland Terje, Hope Sigrun, Torske Tonje, Høyland Anne Lise, Strohmaier Jana, Heiberg Arvid, Rietschel Marcella, Djurovic Srdjan, Andreassen Ole A
NORMENT, KG Jebsen Centre for Psychosis Research, University of Oslo, Oslo 0424, Norway.
Autism Society Norway, Oslo 0609, Norway.
Int J Mol Sci. 2017 May 18;18(5):1078. doi: 10.3390/ijms18051078.
Clinical genetic testing (CGT) of children with autism spectrum disorder (ASD) may have positive and negative effects. Knowledge about parents' attitudes is needed to ensure good involvement of caregivers, which is crucial for accurate diagnosis and effective clinical management. This study aimed to assess parents' attitudes toward CGT for ASD. Parent members of the Norwegian Autism Society were given a previously untested questionnaire and 1455 answered. Linear regression analyses were conducted to evaluate contribution of parent and child characteristics to attitude statements. Provided it could contribute to a casual explanation of their child's ASD, 76% would undergo CGT. If it would improve the possibilities for early interventions, 74% were positive to CGT. Between 49-67% agreed that CGT could have a negative impact on health insurance, increase their concern for the child's future and cause family conflicts. Parents against CGT (9%) were less optimistic regarding positive effects, but not more concerned with negative impacts. The severity of the children's ASD diagnosis had a weak positive association with parent's positive attitudes to CGT (-values range from <0.001 to 0.975). Parents prefer that CGT is offered to those having a child with ASD (65%), when the child's development deviates from normal (48%), or before pregnancy (36%). A majority of the parents of children with ASD are positive to CGT due to possibilities for an etiological explanation.
对患有自闭症谱系障碍（ASD）的儿童进行临床基因检测（CGT）可能会产生积极和消极的影响。了解父母的态度对于确保照顾者的良好参与至关重要，这对于准确诊断和有效的临床管理至关重要。本研究旨在评估父母对ASD的CGT的态度。挪威自闭症协会的家长成员收到了一份以前未经测试的问卷，1455人进行了回答。进行线性回归分析以评估父母和孩子的特征对态度陈述的影响。如果CGT有助于对孩子的ASD做出偶然解释，76%的父母会接受CGT。如果CGT能增加早期干预的可能性，74%的父母对CGT持积极态度。49%-67%的父母认为CGT可能对健康保险产生负面影响，增加他们对孩子未来的担忧并引发家庭冲突。反对CGT的父母（9%）对积极影响不太乐观，但对负面影响的担忧并不更多。孩子ASD诊断的严重程度与父母对CGT的积极态度呈微弱正相关（P值范围从<0.001到0.975）。父母更倾向于在以下情况下为患有ASD的孩子提供CGT：孩子的发育偏离正常（48%），孩子患有ASD（65%），或在怀孕前（36%）。由于有可能进行病因解释，大多数ASD儿童的父母对CGT持积极态度。
