Background

Tuberous Sclerosis Complex International (TSCi) is a consortium of organisations that support individuals with tuberous sclerosis complex (TSC) around the world. In order to improve care for TSC on a global level, TSCi identified the need to expand understanding about existing resources available in other countries, what individuals and caregivers value in TSC care, key gaps between needs and reality in each country, and ways these gaps can be addressed by advocacy organisations around the world.

Methods

An iterative, mixed methods approach (the Improving Care project) was adopted to incorporate views from diverse members of TSCi. Through idea generation, a collection of qualitative open-ended responses and concept elicitation, we were able to build consensus where shared experiences and opinions were identified.

Results

The research performed as a part of the Improving Care project revealed a significant gap between the guidelines and what is actually available to people with TSC worldwide. Three key priority areas of action to improve this gap were identified: 1. Implementation of the guidelines; 2. Access to TSC expertise; 3. Coordinated and integrated healthcare.

Conclusions

There are significant opportunities for key stakeholders, including organisations, clinicians and researchers to improve care for individuals with TSC on both a local and global level. Working across stakeholder groups and utilising TSC organisations are essential to ensure that the advances in TSC research benefit people living with TSC around the world.

中文翻译：

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超越指南：我们如何改善世界各地结节性硬化症患者的医疗保健

背景

Tuberous Sclerosis Complex International (TSCi) 是一个支持世界各地结节性硬化症 (TSC) 患者的组织联盟。为了在全球范围内改善对 TSC 的护理，TSCi 确定需要扩大对其他国家现有资源的了解，个人和护理人员在 TSC 护理中的价值，每个国家的需求与现实之间的主要差距，以及这些差距的方式可以由世界各地的倡导组织来解决。

方法

采用了一种迭代的混合方法方法（改善护理项目）来整合来自 TSCi 不同成员的观点。通过创意生成、一系列定性的开放式响应和概念启发，我们能够在确定共享经验和意见的地方建立共识。

结果

作为改善护理项目的一部分进行的研究揭示了指南与全球 TSC 患者实际可用的内容之间存在重大差距。确定了缩小这一差距的三个主要优先行动领域： 1. 指南的实施；2. 获得 TSC 专业知识；3. 协调和综合的医疗保健。

结论

包括组织、临床医生和研究人员在内的主要利益相关者有很多机会在本地和全球层面改善对 TSC 患者的护理。跨利益相关者团体合作并利用 TSC 组织对于确保 TSC 研究的进步使世界各地的 TSC 患者受益至关重要。