Mental Health Research, Children's Hospital of Eastern Ontario, Research Institute, Ottawa, Canada.
Clin Genet. 2009 Oct;76(4):326-31. doi: 10.1111/j.1399-0004.2009.01250.x.
The purpose of this study was to examine the mental health needs of individuals at risk for adult onset hereditary disorder (AOHD) from the perspective of their genetic service providers, as it is unknown to what extent psychosocial services are required and being met. A mail-out survey was sent to 281 providers on the membership lists of the Canadian Association of Genetic Counsellors and the Canadian College of Medical Geneticists. The survey assessed psychosocial issues that were most commonly observed by geneticists, genetic counsellors (GCs), and nurses as well as availability and types of psychosocial services offered. Of the 129 respondents, half of genetic service providers reported observing signs of depression and anxiety, while 44% noted patients' concerns regarding relationships with family and friends. In terms of providing counselling to patients, as the level of psychological risk increased, confidence in dealing with these issues decreased. In addition, significantly more GCs reported that further training in psychosocial issues would be most beneficial to them if resources were available. As a feature of patient care, it is recommended that gene-based predictive testing include an integrative model of psychosocial services as well as training for genetic service providers in specific areas of AOHD mental health.
本研究旨在从遗传服务提供者的角度探讨有罹患成人发病遗传性疾病（AOHD）风险的个体的心理健康需求，因为尚不清楚需要和正在满足哪些程度的心理社会服务。一项邮寄调查被发送给了加拿大遗传咨询师协会和加拿大医学遗传学家学院会员名单上的 281 名提供者。该调查评估了遗传学家、遗传咨询师（GC）和护士最常观察到的心理社会问题，以及提供的心理社会服务的可用性和类型。在 129 名回应者中，一半的遗传服务提供者报告观察到抑郁和焦虑的迹象，而 44%的人注意到患者对与家人和朋友关系的担忧。就为患者提供咨询而言，随着心理风险水平的提高，处理这些问题的信心下降。此外，如果有资源，GC 报告说，进一步接受心理社会问题的培训对他们最有帮助。作为患者护理的一个特征，建议基于基因的预测性测试包括心理社会服务的综合模式，以及对遗传服务提供者在 AOHD 心理健康特定领域的培训。
