Cullinan John, Ní Chomhraí Orla, Kindlon Tom, Black Leeanne, Casey Bláthín
School of Business and Economics, NUI Galway, Galway, H91 TK33, Ireland.
Irish ME/CFS Association, Dublin, Ireland.
HRB Open Res. 2020 Dec 4;3:88. doi: 10.12688/hrbopenres.13181.1. eCollection 2020.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex chronic disease of unknown origin, whose symptoms, severity, and progression are extremely variable. Despite being relatively common, the condition is poorly understood and routine diagnostic tests and biomarkers are unavailable. There is no evidence on the economic impact of ME/CFS in Ireland. Adopting a patient and public involvement approach, we undertook three semi-structured focus groups, which together included 15 ME/CFS patients and 6 informal carers, to consider costs related to ME/CFS in Ireland, including how and why they arise. Focus groups were audio-recorded and transcribed verbatim, and we employed thematic analysis following the approach set out in Braun and Clarke (2006). Themes from the data were: (1) Healthcare barriers and costs; (2) Socioeconomic costs; (3) Costs of disability; and, (4) Carer-related costs. Patient participants described a range of barriers to effective healthcare that led to extra costs, including delays getting a diagnosis, poor awareness/understanding of the condition by healthcare professionals, and a lack of effective treatments. These were linked to poor prognosis of the illness by participants who, as a result, faced a range of indirect costs, including poorer labour market and education outcomes, and lower economic well-being. Direct extra costs of disability were also described, often due to difficulties accessing appropriate services and supports. Informal carer participants described a range of impacts, including time costs, burnout, and impacts on work and study. The data suggests that ME/CFS patients face a wide range of costs, while there are also wider societal costs in the form of costs to the health service, lost productivity, and impacts on informal carers. These results will inform ongoing research that aims to quantify the economic burden of ME/CFS in Ireland and raise awareness of the illness amongst healthcare providers and policymakers.
肌痛性脑脊髓炎/慢性疲劳综合征（ME/CFS）是一种病因不明、使人致残的复杂慢性病，其症状、严重程度和病程变化极大。尽管该病症相对常见，但人们对其了解甚少，且尚无常规诊断测试和生物标志物。目前没有关于ME/CFS对爱尔兰经济影响的证据。我们采用患者和公众参与的方法，开展了三个半结构化焦点小组，共包括15名ME/CFS患者和6名非正式护理人员，以探讨与爱尔兰ME/CFS相关的成本，包括成本如何产生以及为何产生。焦点小组进行了录音并逐字转录，我们按照布劳恩和克拉克（2006年）提出的方法进行了主题分析。 数据主题包括：（1）医疗保健障碍和成本；（2）社会经济成本；（3）残疾成本；以及（4）与护理人员相关的成本。患者参与者描述了一系列导致额外成本的有效医疗保健障碍，包括诊断延误、医疗保健专业人员对该病症的认识/理解不足以及缺乏有效治疗方法。参与者认为这些与疾病的不良预后相关，因此面临一系列间接成本，包括较差的劳动力市场和教育成果以及较低的经济福祉。还描述了残疾带来的直接额外成本，这通常是由于难以获得适当的服务和支持。非正式护理人员参与者描述了一系列影响，包括时间成本、倦怠以及对工作和学习的影响。 数据表明，ME/CFS患者面临广泛的成本，同时以医疗服务成本、生产力损失以及对非正式护理人员的影响等形式存在更广泛的社会成本。这些结果将为正在进行的旨在量化爱尔兰ME/CFS经济负担的研究提供信息，并提高医疗保健提供者和政策制定者对该疾病的认识。
