O'Brien Mary R
Centre for Health Research and Evaluation, Edge Hill College, Ormskirk, Lancashire.
Br J Nurs. 2004;13(18):1080-4. doi: 10.12968/bjon.2004.13.18.16141.
Healthcare professionals have a professional duty to provide patients with accurate information in order to assist in managing their illness. This may be more difficult with an uncommon illness, such as motor neurone disease (MND), as many healthcare professionals may feel poorly informed about the illness themselves. This study set out to survey the level of knowledge and understanding about MND among a group of 100 healthcare professionals who had personal experience of managing the care of a person with MND. The value of the MND nurse specialist and the Motor Neurone Disease Association as sources of information were highlighted. There was evidence of active information-seeking about MND among all professional groups. However, while many respondents felt that their knowledge of the disease processes in MND and their own profession's role in the management of the condition was good, 57% of respondents felt that their current level of overall knowledge about MND was inadequate.
医疗保健专业人员有专业责任向患者提供准确信息，以帮助他们管理疾病。对于诸如运动神经元病（MND）这样的罕见疾病，这可能会更加困难，因为许多医疗保健专业人员自己可能觉得对这种疾病了解不足。本研究旨在调查100名有照顾MND患者亲身经验的医疗保健专业人员对MND的知识和理解水平。强调了MND专科护士和运动神经元病协会作为信息来源的价值。所有专业群体中都有积极寻求MND信息的证据。然而，虽然许多受访者认为他们对MND疾病过程的了解以及他们自己专业在该疾病管理中的作用是良好的，但57%的受访者认为他们目前对MND的总体了解水平不足。
