O'Brien Mary R, McDermott Christopher, Aoun Samar, Oliver David, Kirton Jennifer A
Faculty of Health, Social Care and Medicine, Edge Hill University, UK.
University of Sheffield, UK.
J Neurol Sci. 2023 Jan 15;444:120483. doi: 10.1016/j.jns.2022.120483. Epub 2022 Oct 29.
How an MND diagnosis is communicated has implications for how individuals adapt to their illness. The consultation process with the neurologist, diagnosis delivery, and adherence to UK guidelines, were explored from the perspectives of people diagnosed with MND and family caregivers.
A cross-sectional approach with people with MND and their caregivers in UK. An anonymous online survey, based on the SPIKES protocol for delivering bad news and containing questions focusing on the UK NICE MND guideline, was distributed in 2018-19.
69 people with MND and 39 caregivers responded. People with MND were more likely than caregivers to rate highly their neurologist's skills and ability and their satisfaction with delivery of the diagnosis. The amount of time spent with the neurologist at diagnosis had an impact on the level of satisfaction and rating of the neurologist's skills and abilities. The SPIKES criteria were generally not met. Many of the NICE MND guideline recommendations were not met, though adherence was greater in MND Centres.
While there is evidence of satisfaction with the delivery of the diagnosis amongst people with MND and caregivers, there is room for improvement. There is a need for greater awareness of the requirements of people with MND and caregivers. There is also a need to raise awareness of the NICE MND guideline and ensure adequate training, time and funding to ensure communication at this difficult time is acceptable and effective. Where possible it would be preferable for referrals to be made to MND centres.
运动神经元病（MND）诊断的传达方式会影响个体对疾病的适应情况。从被诊断为MND的患者及其家庭照料者的角度，探讨了与神经科医生的会诊过程、诊断告知以及对英国指南的遵循情况。
对英国的MND患者及其照料者采用横断面研究方法。2018 - 19年开展了一项基于SPIKES坏消息告知协议且包含聚焦于英国国家卫生与临床优化研究所（NICE）MND指南问题的匿名在线调查。
69名MND患者和39名照料者做出了回应。与照料者相比，MND患者更有可能高度评价其神经科医生的技能和能力以及对诊断告知的满意度。诊断时与神经科医生相处的时间长短对满意度以及对神经科医生技能和能力的评分有影响。SPIKES标准总体上未得到满足。NICE MND指南的许多建议未得到遵循，不过在MND中心遵循情况更好。
虽然有证据表明MND患者及其照料者对诊断告知感到满意，但仍有改进空间。需要提高对MND患者及其照料者需求的认识。还需要提高对NICE MND指南的认识，并确保有足够的培训、时间和资金，以确保在这个困难时期的沟通是可接受且有效的。在可能的情况下，最好将会诊转至MND中心。
