People with intellectual disability (PWID) consistently identify the importance of health service information that is accessible and relevant. Resources tailored to the information and support needs of PWID can facilitate inclusivity in their health care (including access to genomic medicine) and improve healthcare outcomes. Despite the fact that PWID are commonly referred to genetics services, there is a lack of appropriate resources to help them prepare for their appointments. We therefore aimed to evaluate the feasibility and acceptability of a booklet for PWID to read with their carers prior to their genetics appointment, to help them prepare for what they may experience. With input from Easy to Read experts and PWID who were members of the New South Wales (NSW) Council for Intellectual Disability, the information booklet ‘Getting ready for your visit to the genetics clinic’ was produced. Australian healthcare professionals (HCP) familiar with clinical genetics services were invited to complete an anonymous online survey designed to assess perceived relevance, readability, and utility of the resource. Recruitment of HCPs was pursued via affiliated clinical services and email distribution through clinical genetics organizations. Sixty‐six HCPs completed and submitted the survey. The results demonstrated that HCPs believed the booklet represented a typical clinical genetics service appointment and that the majority would provide a copy of the resource to clients and their carers. They reported that the booklet was easy to understand and entailed appropriate content and images which were presented clearly and simply. Some minor modifications were recommended and incorporated into the resource. A model of customizable booklets such as this could be transferrable across clinical genetics services and guide development of other resources for PWID. This may help to reduce healthcare disparities, improve client satisfaction, and facilitate involvement of PWID in their own healthcare decisions.

中文翻译：

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智力障碍成年人的遗传前临床资源评估：遗传前临床援助。

智障人士（PWID）始终确定可访问且相关的卫生服务信息的重要性。为PWID的信息和支持需求量身定制的资源可以促进其医疗保健的包容性（包括获得基因组医学的机会）并改善医疗效果。尽管PWID通常被称为遗传服务，但缺乏适当的资源来帮助他们准备任命。因此，我们旨在评估PWID手册的可行性和可接受性，以便在其遗传学任命之前与照护者一起阅读，以帮助他们为可能遇到的经历做准备。通过易于阅读的输入专家和PWID是新南威尔士州（NSW）智障理事会的成员，制作了信息手册“为您前往遗传学诊所做准备”。邀请了熟悉临床遗传学服务的澳大利亚医疗保健专业人员（HCP）完成一项匿名的在线调查，旨在评估该资源的感知相关性，可读性和实用性。HCP的招募是通过附属的临床服务和通过临床遗传学组织分发电子邮件来进行的。66个HCP完成并提交了调查。结果表明，HCP认为这本手册代表了典型的临床遗传学服务任命，并且大多数将向客户及其护理人员提供该资源的副本。他们报告说，该手册易于理解，并包含适当的内容和图像，这些内容和图像清晰，简单地呈现出来。建议进行一些较小的修改并将其合并到资源中。这样的可定制小册子模型可以在临床遗传学服务之间转移，并指导PWID其他资源的开发。这可能有助于减少医疗保健差异，提高客户满意度并促进PWID参与他们自己的医疗保健决策。