Division of Neuroscience, Manchester Academic Health Science Centre, University of Manchester, Manchester, UK.
Department of Neurology, Manchester Centre for Clinical Neurosciences, Northern Care Alliance NHS Foundation Trust, Salford, UK.
Mov Disord Clin Pract. 2024 Oct;11(10):1266-1273. doi: 10.1002/mdc3.14196. Epub 2024 Aug 27.
Severe dysphagia poses a significant challenge for clinicians regarding feeding tube choices, practices, and timing due to a lack of evidence-based guidance.
To assess national clinical practices and opinions on gastrostomy use in patients with atypical parkinsonian syndromes (APS) across the UK.
Online survey was administered to clinicians and allied health professionals regarding availability of services, current use, perceived advantages, and problems associated with gastrostomy insertion.
We received responses from 47 respondents across 12 UK centers, including 44 clinicians specialized in APS. Consensus was observed regarding primary indications for gastrostomy insertion and circumstances justifying avoidance of the procedure. Limitations in recommending gastrostomy due to insufficient evidence on safety and outcomes, survival and quality of life were identified. Widespread agreement on delays in gastrostomy discussions was highlighted as a challenge in optimizing patient care, together with variability in current practices and concerns over the lack of a standardized gastrostomy pathway, emphasizing the need for further research to address existing evidence gaps.
This multi-center survey highlights agreement among clinicians on key aspects of indication, challenges, and limitations such as delayed decision-making and the absence of standardized pathways regarding the timing, method, and overall approach to gastrostomy insertion in APS. This study identified next steps to facilitate a more structured approach to future research toward a consensus on best practices for gastrostomy in APS. Addressing these challenges is crucial for enhancing patient outcomes and overall care quality in APS.
由于缺乏循证指导，严重吞咽困难给临床医生在选择饲管、实践和时机方面带来了重大挑战。
评估英国全国范围内在非典型帕金森综合征（APS）患者中使用胃造口术的临床实践和意见。
向英国 12 个中心的临床医生和相关卫生专业人员进行了在线调查，内容涉及服务的可及性、当前使用情况、对胃造口术插入的优势和相关问题的看法。
我们收到了来自 12 个英国中心的 47 位受访者的回复，其中包括 44 位专门研究 APS 的临床医生。在胃造口术插入的主要适应证和避免该手术的理由方面达成了共识。由于缺乏安全性和结果、生存和生活质量方面的证据，推荐胃造口术存在限制。强调了在优化患者护理方面存在延迟进行胃造口术讨论的问题，以及当前实践中的差异和对缺乏标准化胃造口术途径的担忧，这突显了需要进一步研究来解决现有证据空白。
这项多中心调查强调了临床医生在指示、挑战和限制方面的关键方面达成了共识，例如决策延迟和缺乏标准化途径，这些都涉及 APS 中胃造口术的时机、方法和总体方法。本研究确定了下一步措施，以促进对 APS 中胃造口术最佳实践达成共识的更具结构性的方法。解决这些挑战对于提高 APS 患者的预后和整体护理质量至关重要。
