Abstract：
OBJECTIVE: Selective dorsal rhizotomy (SDR) is a neurosurgical intervention used to reduce spasticity in children with cerebral palsy (CP). There is minimal relevant, evidence-based information available for Australian families and clinicians. This study aims to investigate the knowledge of people with lived experience and clinicians regarding SDR, including how they currently access information and what information they seek.
METHODS: Adults with CP, carers of children with CP and clinicians treating children with CP were invited to complete an online survey. Data regarding participant demographics, current knowledge and confidence in knowledge about CP and SDR, information source/s used and participants level of trust in these sources are presented as counts and percentages. Comparisons in knowledge between groups were analysed.
RESULTS: A total of 114 surveys were completed: 63 clinicians, 48 carers, and 3 adults with CP. Eighty percent of clinicians were allied health professionals. People with lived experience were less confident in their knowledge about SDR compared to knowledge of CP (P < 0.001). Clinicians rated scientific research literature and the hospital team as the most useful and trustworthy information source. People with lived experience used a wider range of information sources including the internet, rating their community therapy team and other people with lived experience as the most useful.
CONCLUSIONS: This study identified a lack of confidence in knowledge of SDR for people with lived experience, likely due to a gap in accessible and readable evidence-based information. While both groups differed in how they access information, there was agreement that greater information about SDR is needed.
METHODS: Adults with CP, carers of children with CP and clinicians treating children with CP were invited to complete an online survey. Data regarding participant demographics, current knowledge and confidence in knowledge about CP and SDR, information source/s used and participants level of trust in these sources are presented as counts and percentages. Comparisons in knowledge between groups were analysed.
RESULTS: A total of 114 surveys were completed: 63 clinicians, 48 carers, and 3 adults with CP. Eighty percent of clinicians were allied health professionals. People with lived experience were less confident in their knowledge about SDR compared to knowledge of CP (P < 0.001). Clinicians rated scientific research literature and the hospital team as the most useful and trustworthy information source. People with lived experience used a wider range of information sources including the internet, rating their community therapy team and other people with lived experience as the most useful.
CONCLUSIONS: This study identified a lack of confidence in knowledge of SDR for people with lived experience, likely due to a gap in accessible and readable evidence-based information. While both groups differed in how they access information, there was agreement that greater information about SDR is needed.
摘要：
目的：选择性背根切断术（SDR）是一种用于减轻脑瘫（CP）儿童痉挛的神经外科干预措施。有最小的相关性，澳大利亚家庭和临床医生可获得的循证信息。本研究旨在调查有生活经验的人和临床医生对特别提款权的了解。包括他们目前如何获取信息以及他们寻求什么信息。
方法：患有CP的成年人，我们邀请CP患儿的护理人员和治疗CP患儿的临床医师完成一项在线调查.有关参与者人口统计的数据，当前对CP和SDR的知识和信心，使用的信息源和这些源的参与者信任级别以计数和百分比表示。分析了组间知识的比较。
结果：共完成114项调查：63名临床医生，48个看护者,和3名患有CP的成年人。80%的临床医生是专职医疗专业人员。与CP知识相比，有生活经验的人对SDR知识的信心不足（P<0.001）。临床医生将科研文献和医院团队评为最有用和最值得信赖的信息源。有生活经验的人使用了更广泛的信息来源，包括互联网，将他们的社区治疗团队和其他有生活经验的人评为最有用的。
结论：这项研究发现，有生活经验的人对特别提款权知识缺乏信心，可能是由于可访问和可读的基于证据的信息存在差距。虽然两组在获取信息的方式上有所不同，与会者一致认为，需要更多关于特别提款权的信息。
方法：患有CP的成年人，我们邀请CP患儿的护理人员和治疗CP患儿的临床医师完成一项在线调查.有关参与者人口统计的数据，当前对CP和SDR的知识和信心，使用的信息源和这些源的参与者信任级别以计数和百分比表示。分析了组间知识的比较。
结果：共完成114项调查：63名临床医生，48个看护者,和3名患有CP的成年人。80%的临床医生是专职医疗专业人员。与CP知识相比，有生活经验的人对SDR知识的信心不足（P<0.001）。临床医生将科研文献和医院团队评为最有用和最值得信赖的信息源。有生活经验的人使用了更广泛的信息来源，包括互联网，将他们的社区治疗团队和其他有生活经验的人评为最有用的。
结论：这项研究发现，有生活经验的人对特别提款权知识缺乏信心，可能是由于可访问和可读的基于证据的信息存在差距。虽然两组在获取信息的方式上有所不同，与会者一致认为，需要更多关于特别提款权的信息。
