School of Community Based Medicine, University of Manchester, Manchester, UK.
BMC Fam Pract. 2012 Sep 21;13:93. doi: 10.1186/1471-2296-13-93.
NICE guidelines emphasise the need for a confident, early diagnosis of Chronic Fatigue Syndrome/ Myalgic Encephalitis (CFS/ME) in Primary Care with management tailored to the needs of the patient. Research suggests that GPs are reluctant to make the diagnosis and resources for management are currently inadequate. This study aimed to develop resources for practitioners and patients to support the diagnosis and management of CFS/ME in primary care.
Semi structured interviews were conducted with patients, carers, GPs, practice nurses and CFS/ME specialists in North West England. All interviews were audio recorded, transcribed and analysed qualitatively using open explorative thematic coding. Two patient involvement groups were consulted at each stage of the development of resources to ensure that the resources reflect everyday issues faced by people living with CFS/ME.
Patients and carers stressed the importance of recognising CFS/ME as a legitimate condition, and the need to be believed by health care professionals. GPs and practice nurses stated that they do not always have the knowledge or skills to diagnose and manage the condition. They expressed a preference for an online training package. For patients, information on getting the most out of a consultation and the role of carers was thought to be important. Patients did not want to be overloaded with information at diagnosis, and suggested information should be given in steps. A DVD was suggested, to enable information sharing with carers and family, and also for those whose symptoms act as a barrier to reading.
Rather than use a top-down approach to the development of training for health care practitioners and information for patients and carers, we have used data from key stakeholders to develop a patient DVD, patient leaflets to guide symptom management and a modular e-learning resource which should equip GPs to diagnose and manage CFS/ME effectively, meet NICE guidelines and give patients acceptable, evidence-based information.
NICE 指南强调，初级保健中需要对慢性疲劳综合征/肌痛性脑脊髓炎（CFS/ME）进行自信、早期诊断，并根据患者的需求进行管理。研究表明，全科医生不愿意做出诊断，并且目前管理资源不足。本研究旨在为从业者和患者开发资源，以支持初级保健中 CFS/ME 的诊断和管理。
在英格兰西北部对患者、护理人员、全科医生、执业护士和 CFS/ME 专家进行了半结构化访谈。所有访谈均进行了录音、转录，并使用开放式探索性主题编码进行了定性分析。在资源开发的每个阶段都咨询了两个患者参与小组，以确保资源反映出患有 CFS/ME 的人所面临的日常问题。
患者和护理人员强调了将 CFS/ME 视为合法疾病的重要性，以及需要得到医疗保健专业人员的信任。全科医生和执业护士表示，他们并不总是具备诊断和管理该疾病的知识或技能。他们表示更倾向于在线培训包。对于患者，有关如何充分利用咨询和护理人员作用的信息被认为是重要的。患者不希望在诊断时收到过多信息，并建议逐步提供信息。建议制作 DVD，以便与护理人员和家人共享信息，也为那些因症状而无法阅读的人提供信息。
我们没有采用自上而下的方法来为医疗保健从业者开发培训，也没有为患者和护理人员开发信息，而是利用主要利益相关者的数据来开发患者 DVD、指导症状管理的患者传单以及模块化的电子学习资源，这些资源应使全科医生能够有效地诊断和管理 CFS/ME，符合 NICE 指南，并为患者提供可接受的、基于证据的信息。
