Comp A-Developing the Spina Bifida Collaborative Care Network

描述（由申请人提供）：脊柱裂临床标准没有很好地描述或标准化。虽然多学科诊所被认为是儿童脊柱裂的标准护理，但在成人中缺乏支持这种模式的证据。良好、无缝的卫生保健服务对脊柱裂患者很重要；然而，目前旨在满足脊柱裂儿童需求的护理系统在儿童成年后就结束了。为患有脊柱裂的成年人找到良好的护理是困难的，因为需要的专家数量，服务于这一不断增长的人口的从业人员数量有限，护理系统没有准备好处理他们的需求，他们不断增长的慢性成人需求，以及缺乏对他们的了解。这一群体面临着不稳定的未来，除非采取一种合作方式来确定他们的需求，并创建一个提供统一、充分的多学科护理的卫生保健系统。临床护理监测和跟踪（CCMT）基础设施的创建是关于寻找问题和需求，以及评估和利用促进脊柱裂社区更好的健康和福祉的优势和资源。对脊柱裂临床网络的研究工作导致了国家脊柱裂患者登记（NSBPR），诊所列表的汇编，诊所分类方案，以及世界脊柱裂护理和研究大会的创建。脊柱裂协会（SBA）目前正在领导脊柱裂协作护理网络（SBCCN）制定一项战略计划，以缩小已概述的卫生保健差距。SBCCN的目标是确定脊柱裂患者的需求，制定和实施与脊柱裂成人患者联系和沟通的方法，解决医疗保健需求和护理差距，改善卫生和社区资源信息的可获得性，确定和促进NSBPR的研究重点，使用（2008）分类方案开发基于质量的脊柱裂临床结构。描述和传播符合以质量为基础的临床结构的脊柱裂护理地点清单，以及

DESCRIPTION (provided by applicant): Spina Bifida clinic standards are not well described or standardized. While multi-disciplinary clinics are considered the standard of care for children with Spina Bifida, evidence to support this model in adults is lacking. Good, seamless health care delivery is important for people with Spina Bifida; however, current systems of care designed to meet the needs of children with Spina Bifida end when a child becomes an adult. Finding good care for adults with Spina Bifida is difficult because of the number of specialists needed, the limited number of practitioners serving this growing population, systems of care that is unprepared to deal with their needs, their growing chronic adult needs, and the lack of knowledge about them. This group is facing a precarious future unless a collaborative approach is initiated to identify their needs and create a health care system that offers uniform, adequate multi-disciplinary care. The creation of the Clinical Care Monitoring and Tracking (CCMT) infrastructure is about looking for problems and needs and about assessing and harnessing the strengths and resources that promote better health and well-being in the Spina Bifida community. Research efforts into the Spina Bifida clinic network resulted in a National Spina Bifida Patient Registry (NSBPR), the compilation of the clinics list, a clinic classification schem, and the creation of the World Congress on Spina Bifida Care and Research. The Spina Bifida Association (SBA) is currently leading the Spina Bifida Collaborative Care Network (SBCCN) in developing a strategic plan to close the health care gaps that have been outlined. The goals of the SBCCN are to identify the needs of people living with Spina Bifida, develop and implement approaches to connect and communicate with adults living with Spina Bifida, address health care needs as well as gaps in care, improve the availability of information on health and community resources, identify and promote research priorities for the NSBPR, develop a quality-based Spina Bifida clinical structure using the (2008) classification scheme, describe and disseminate the list of Spina Bifida care sites that meet the quality-based clinical structure, and develop, implement, and disseminate a comprehensive evaluation plan that measures the effectiveness of the activities of this funding announcement. Expected Outcomes are creation of a public health infrastructure that monitors, tracks, and evaluates Spina Bifida care across the lifespan, development of health outcomes for people with Spina Bifida, and the improvement of a high performing Spina Bifida clinic structure.