Eriks-Hoogland Inge, Jordan Xavier, Baumberger Michael, Seijas Vanessa, Huber Burkhart, Michel Franz, Thietje Roland, Müller Lorena
Department of Paraplegiology, Swiss Paraplegic Centre (SPZ), Nottwil, Switzerland.
Faculty of Health Sciences and Medicine, University of Lucerne, Lucerne, Switzerland.
Front Rehabil Sci. 2024 Oct 11;5:1371553. doi: 10.3389/fresc.2024.1371553. eCollection 2024.
The purpose of this systematic review is to provide an overview of published follow-up care programs of primary and secondary health conditions (SHCs) in spinal cord injury/disorder (SCI/D) and spina bifida and describe recommendations on content, frequency, setting of follow-up care programs for persons with SCI/D and spina bifida.
According to the sequence of procedures of the AWMF (Association of the Scientific Medical Societies in Germany) a systematic literature search was performed (in PubMed, Cochrane Library and nine additional databases for guidelines) between 5 September 2019 and 22 September 2019. Publications (Jan. 2008-Dec. 2018) and guidelines (up to 2018) published in English or German and describing an evidence-based follow-up care program for persons with SCI/D or spina bifida were included.
The systematic literature search found 1973 publications in PubMed and Cochrane Library, resulting in 19 papers for SCI/D and 6 for Spina bifida. Additionally, we included 34 guidelines developed by reputable committees or medical associations. All eligible guidelines, and publications, were rated and classified according to the guidance of AWMF. Of the retrieved publications, and guidelines, level of evidence of follow-up care programs was mostly based on informal procedures and expert opinion or formally consent based expert opinion. None of the guidelines, or publications described an evidence based comprehensive clinical practice guideline (CPG) for follow-up care for people with SCI/D or spina bifida.
Based on the comprehensive and extensive literature research conducted, regular (annual) follow-up care appointments at specialized SCI clinics are recommended. There is a notable absence of a comprehensive CPG covering all relevant health conditions for long-term follow-up in SCI/D or spina bifida. In order to provide persons with SCI/D with up-to-date and best possible medical and rehabilitative care, a CPG for follow-up care is urgently needed. In response to this gap, the German-speaking Medical Society of Paraplegia (DMGP) has commissioned its members to establish a guideline for follow-up care for individuals with SCI/D. The current review serves as an evidence-based framework for the development of this guideline.
本系统评价旨在概述已发表的脊髓损伤/疾病（SCI/D）和脊柱裂患者原发性和继发性健康状况（SHC）的后续护理计划，并描述针对SCI/D和脊柱裂患者后续护理计划的内容、频率和设置的建议。
根据德国科学医学协会（AWMF）的程序顺序，于2019年9月5日至2019年9月22日进行了系统的文献检索（在PubMed、Cochrane图书馆和另外九个指南数据库中）。纳入了2008年1月至2018年12月以英文或德文发表的、描述针对SCI/D或脊柱裂患者循证后续护理计划的出版物以及截至2018年的指南。
系统文献检索在PubMed和Cochrane图书馆中找到1973篇出版物，其中19篇关于SCI/D，6篇关于脊柱裂。此外，我们纳入了由知名委员会或医学协会制定的34项指南。所有符合条件的指南和出版物均根据AWMF的指导进行评分和分类。在检索到的出版物和指南中，后续护理计划的证据水平大多基于非正式程序、专家意见或基于正式共识的专家意见。没有指南或出版物描述针对SCI/D或脊柱裂患者后续护理的循证综合临床实践指南（CPG）。
基于全面而广泛的文献研究，建议在专门的SCI诊所定期（每年）进行后续护理预约。明显缺乏涵盖SCI/D或脊柱裂长期随访所有相关健康状况的综合CPG。为了为SCI/D患者提供最新且尽可能最佳的医疗和康复护理，迫切需要后续护理的CPG。针对这一差距，德语区截瘫医学会（DMGP）已委托其成员为SCI/D患者制定后续护理指南。本综述为该指南的制定提供了循证框架。
