Community and Health Research Unit, School of Health and Social Care, University of Lincoln, Lincoln, Lincolnshire, United Kingdom.
Lincoln International Institute for Rural Health, University of Lincoln, Lincoln, Lincolnshire, United Kingdom.
PLoS One. 2021 Feb 3;16(2):e0245826. doi: 10.1371/journal.pone.0245826. eCollection 2021.
Guillain-Barré syndrome (GBS) is an immune-mediated polyradiculoneuropathy, with an incidence of 1-2/100,000 per year. Its severity is variable, ranging from very mild cases with brief weakness to severe paralysis, leading to inability to breathe independently, or even death. Currently there is limited evidence exploring the experiences of GBS patients. The aim of this study was to review patients' experiences and perceptions of GBS and its variants at diagnosis, discharge and during recovery, by conducting a systematic review and thematic meta-synthesis of qualitative studies of patients' experiences of GBS (and its variants).
We searched twelve electronic databases, supplemented with internet searches and forward and backward citation tracking from the included studies and review articles. Data were synthesised thematically following the Thomas and Harden approach. The CASP Qualitative Checklist was used to assess the quality of the included studies of this review.
Our search strategy identified a total of 5,282 citations and after removing duplicates and excluding citations based on title and abstract, and full-text screening, five studies were included in the review and meta-synthesis; all included studies were considered of acceptable quality. Through constant discussions and an iterative approach, we developed six analytical themes following a patient's journey from suspecting that they had a health problem, through to being hospitalised, experiencing ongoing difficulties, slowly recovering from GBS, adjusting to their new circumstances, and re-evaluating their lives.
Despite the variety of experiences, it was evident from all included studies that being diagnosed with and surviving GBS was a life-changing experience for all participants.
Protocol was registered (CRD42019122199) on the International Prospective Register of Systematic Reviews (http://www.crd.york.ac.uk/PROSPERO).
吉兰-巴雷综合征(GBS)是一种免疫介导的多神经根神经病,年发病率为 1-2/10 万。其严重程度不一,从非常轻微的短暂无力到严重瘫痪,导致无法独立呼吸,甚至死亡。目前,关于 GBS 患者的经验证据有限。本研究旨在通过对 GBS 患者经历的定性研究进行系统回顾和主题元分析,探讨患者在诊断、出院和康复期间对 GBS 及其变异体的体验和看法。
我们检索了 12 个电子数据库,并补充了互联网搜索以及从纳入研究和综述文章中进行的向前和向后引文跟踪。数据按照托马斯和哈登方法进行主题综合。本综述使用 CASP 定性清单评估纳入研究的质量。
我们的搜索策略共确定了 5282 条引文,在去除重复项和根据标题和摘要以及全文筛选排除引文后,共有 5 项研究纳入综述和元分析;所有纳入的研究均被认为具有可接受的质量。通过不断的讨论和迭代方法,我们根据患者从怀疑自己有健康问题到住院、经历持续困难、从 GBS 缓慢康复、适应新环境以及重新评估生活的旅程,制定了六个分析主题。
尽管经历各不相同,但所有纳入的研究都表明,被诊断患有 GBS 并幸存下来对所有参与者来说都是改变生活的经历。
方案已在国际前瞻性系统评价注册库(http://www.crd.york.ac.uk/PROSPERO)进行注册(CRD42019122199)。