Development of a decision aid for Australian carers of children with cerebral palsy and their community clinicians, about selective dorsal rhizotomy surgery

Develop and user-test a patient decision aid about selective dorsal rhizotomy (SDR) surgery for carers of children with cerebral palsy (CP) and clinicians treating children with CP. This study utilised a mixed-methods design. Stage One developed the prototype. Stage Two recruited carers and clinicians to focus groups/semi-structured interviews to review the prototype. Stage Three was an iterative cycle of redrafts based on feedback from Stage Two and input from the SDR Advisory and Consumer Groups. Stage Four assessed acceptability of the SDR Decision Aid <i>via</i> questionnaire. A prototype SDR decision aid was developed and reviewed by 13 clinicians and 8 carers. Five themes were identified: (1) positive and (2) constructive feedback on the presentation; and additional information considered important for future end-users regarding (3) rehabilitation, (4) lived experience, and (5) selection processes. The final version of the SDR Decision Aid was rated highly acceptable by carers and clinicians, based on length, amount of information provided, and usefulness in clinical settings. Participants indicated they would recommend the decision aid to others seeking information about SDR. The SDR Decision Aid is an acceptable and valuable tool for helping parents discuss SDR as a treatment option with their clinicians. Selective dorsal rhizotomy (SDR) is a neurosurgical procedure performed to reduce spasticity in the lower limbs of children with bilateral spastic cerebral palsy (CP).There are limited accessible, evidence-based, reliable resources to educate families and clinicians about SDR in Australia.This gap was addressed through a co-design process to develop an SDR Decision Aid.Acceptability testing found that the SDR Decision Aid is an acceptable and valuable tool in initiating discussions to facilitate shared decision-making about SDR as a treatment option for children with CP. Selective dorsal rhizotomy (SDR) is a neurosurgical procedure performed to reduce spasticity in the lower limbs of children with bilateral spastic cerebral palsy (CP). There are limited accessible, evidence-based, reliable resources to educate families and clinicians about SDR in Australia. This gap was addressed through a co-design process to develop an SDR Decision Aid. Acceptability testing found that the SDR Decision Aid is an acceptable and valuable tool in initiating discussions to facilitate shared decision-making about SDR as a treatment option for children with CP.

本研究针对脑瘫（CP）患儿照护者及脑瘫患儿临床诊疗医师，开发一款针对选择性脊神经后根切断术（selective dorsal rhizotomy, SDR）的患者决策辅助工具，并开展用户测试。本研究采用混合研究设计，共分为四个阶段：第一阶段完成原型开发；第二阶段招募照护者与临床医师参与焦点小组访谈及半结构化访谈，对原型进行评审；第三阶段基于第二阶段的反馈及SDR咨询委员会与消费者团体的意见，开展多轮迭代修订；第四阶段通过问卷评估该SDR决策辅助工具的可接受性。
本次研究共招募13名临床医师与8名照护者对SDR决策辅助工具原型进行评审，最终归纳出五大主题：（1）正面评价与（2）针对呈现形式的建设性反馈；此外，受访对象认为未来终端用户需补充（3）康复相关、（4）亲历者经验及（5）手术遴选流程相关的信息。
基于工具的篇幅、信息含量及临床应用价值，照护者与临床医师对最终版SDR决策辅助工具的可接受度评分较高。参与者表示，他们会将该决策辅助工具推荐给其他寻求SDR相关信息的人群。SDR决策辅助工具可有效帮助患儿家长与临床医师就SDR这一治疗方案展开讨论，是一款兼具实用性与价值的工具。
选择性脊神经后根切断术（selective dorsal rhizotomy, SDR）是一种神经外科手术，用于缓解双侧痉挛型脑瘫患儿的下肢痉挛症状。目前澳大利亚境内可供获取的、基于证据且可靠的SDR相关宣教资源十分匮乏。本研究通过协同设计流程开发了SDR决策辅助工具，填补了这一空白。可接受性测试结果表明，SDR决策辅助工具可有效启动相关讨论，助力针对脑瘫患儿SDR治疗方案的共同决策，是一款兼具可接受性与应用价值的工具。
选择性脊神经后根切断术（selective dorsal rhizotomy, SDR）是一种神经外科手术，用于缓解双侧痉挛型脑瘫患儿的下肢痉挛症状。目前澳大利亚境内可供获取的、基于证据且可靠的SDR相关宣教资源十分匮乏。本研究通过协同设计流程开发了SDR决策辅助工具，填补了这一空白。可接受性测试结果表明，SDR决策辅助工具可有效启动相关讨论，助力针对脑瘫患儿SDR治疗方案的共同决策，是一款兼具可接受性与应用价值的工具。