在初级保健中实施资源以支持慢性疲劳综合征/肌痛性脑脊髓炎（CFS/ME）的诊断和管理：一项定性研究。
Implementing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in primary care: A qualitative study.
作者信息
Bayliss Kerin, Riste Lisa, Band Rebecca, Peters Sarah, Wearden Alison, Lovell Karina, Fisher Louise, Chew-Graham Carolyn A
机构信息
Public Programmes, Central Manchester University Hospitals NHS Foundation Trust, University of Manchester, Manchester Academic Health Science Centre, Manchester, UK.
Centre for Primary Care, Institute of Population Health, University of Manchester, Manchester, UK.
出版信息
BMC Fam Pract. 2016 Jun 4;17:66. doi: 10.1186/s12875-016-0453-8.
BACKGROUND
Previous research has highlighted that many GPs lack the confidence and knowledge to diagnose and manage people with CFS/ME. Following the development of an online training module for GPs, and an information pack and DVD for patients, this study explored the extent to which these resources can be implemented in routine primary care.
METHODS
Semi structured qualitative interviews were completed with patients and GPs across North West England. All interviews were transcribed and analysed using open exploratory thematic coding. Following this thematic analysis, the authors conducted a further theory-driven analysis of the data guided by Normalisation Process Theory.
RESULTS
When used in line with advice from the research team, the information resource and training were perceived as beneficial to both patients and GPs in the diagnosis and management of CFS/ME. However, 47 % of patients in this study did not receive the information pack from their GP. When the information pack was used, it was often incomplete, sent in the post, and GPs did not work with patients to discuss the materials. Only13 out of 21 practices completed the training module due to time pressures and the low priority placed on low prevalence, contentious, hard to manage conditions. When the module was completed, many GPs stated that it was not feasible to retain the key messages as they saw so few patients with the condition. Due to the complexity of the condition, GPs also believed that the diagnosis and management of CFS/ME should take place in a specialist care setting.
CONCLUSION
While barriers to the implementation of training and resources for CFS/ME remain, there is a need to support CFS/ME patients to access reliable, evidence based information outside primary care. Our findings suggest that future research should develop an online resource for patients to support self-management.
背景
先前的研究强调，许多全科医生缺乏诊断和管理慢性疲劳综合征/肌痛性脑脊髓炎患者的信心和知识。在为全科医生开发了一个在线培训模块以及为患者制作了一个信息包和DVD之后，本研究探讨了这些资源在常规初级保健中能够得到实施的程度。
方法
对英格兰西北部的患者和全科医生进行了半结构化定性访谈。所有访谈都进行了转录，并使用开放式探索性主题编码进行分析。在进行这种主题分析之后，作者根据规范化过程理论对数据进行了进一步的理论驱动分析。
结果
按照研究团队的建议使用时，信息资源和培训被认为对慢性疲劳综合征/肌痛性脑脊髓炎患者和全科医生的诊断及管理都有益。然而，本研究中47%的患者未从其全科医生处收到信息包。当使用信息包时，它往往不完整，是通过邮寄发送且全科医生没有与患者一起讨论这些材料。由于时间压力以及对低患病率、有争议且难以管理的病症重视程度低，21家诊所中只有13家完成了培训模块。当完成该模块时，许多全科医生表示由于他们见到患该病症的患者很少，所以保留关键信息是不可行的。由于该病症的复杂性，全科医生还认为慢性疲劳综合征/肌痛性脑脊髓炎的诊断和管理应该在专科护理环境中进行。
结论
虽然慢性疲劳综合征/肌痛性脑脊髓炎培训和资源的实施仍存在障碍，但需要支持慢性疲劳综合征/肌痛性脑脊髓炎患者在初级保健之外获取可靠的、基于证据的信息。我们的研究结果表明，未来的研究应该为患者开发一个在线资源以支持自我管理。
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