Daker-White Gavin, Sanders Caroline, Greenfield Julie, Ealing John, Payne Katherine
Health Sciences -- Methodology Research Group, School of Community Based Medicine, The University of Manchester, Jean McFarlane Building, Manchester, UK.
Chronic Illn. 2011 Jun;7(2):120-33. doi: 10.1177/1742395310390532. Epub 2011 Jan 27.
To examine the perceptions and experiences of the diagnosis process in people with a progressive ataxia, a group of rare complex neurological conditions usually leading to disturbances in balance and speech.
An explorative qualitative study involving analysis of public accounts posted to specialist Internet discussion forums by people with symptoms of ataxia. Internet data were utilized partly because ataxia is a rare condition.
The main themes that emerged were diagnosis as an arduous process, achieving diagnosis as a privilege, the importance of getting a medical label, being believed with regard to symptoms and 'idiopathic' diagnosis as a non-diagnosis. The accounts of people who were not able to secure a definitive diagnosis suggested that their priorities had changed from getting a diagnosis to managing and learning to live with their progressive disabilities.
The diagnosis of the progressive ataxias presents challenges for patients, clinicians and in terms of the extensive use of finite healthcare resources. Our findings suggest there are varied views on the importance of diagnosis to people with progressive ataxia. This warrants further in-depth research to understand how people rate the relative utility of diagnostics.
研究进行性共济失调患者对诊断过程的认知和体验，进行性共济失调是一组罕见的复杂神经系统疾病，通常会导致平衡和言语障碍。
一项探索性定性研究，对共济失调症状患者在专业互联网讨论论坛上发布的公开记录进行分析。部分采用互联网数据是因为共济失调是一种罕见疾病。
出现的主要主题包括诊断是一个艰巨的过程、获得诊断是一种特权、获得医学标签的重要性、症状被认可以及“特发性”诊断等同于未确诊。未能获得明确诊断的患者表示，他们的首要任务已从寻求诊断转变为应对和学会与进行性残疾共存。
进行性共济失调的诊断对患者、临床医生以及有限医疗资源的广泛使用而言都存在挑战。我们的研究结果表明，对于进行性共济失调患者来说，诊断的重要性存在不同观点。这需要进一步深入研究，以了解人们如何评估诊断的相对效用。
