Centre for Clinical and Community Applications of Health Psychology, Department of Psychology, University of Southampton, Southampton, United Kingdom.
Health Sciences, University of Southampton, Southampton, United Kingdom.
PLoS One. 2018 Feb 28;13(2):e0193407. doi: 10.1371/journal.pone.0193407. eCollection 2018.
Multiple sclerosis (MS) has a varied and uncertain trajectory. The recent development of analytical processing tools that draw on large longitudinal patient databases facilitates personalised long-term prognosis estimates. This has the potential to improve both shared treatment decision-making and psychological adjustment. However, there is limited research on how people with MS feel about prognosis communication and forecasting. This study investigated the prognosis communication experiences and preferences of people with MS and explored whether clinical, demographic and psychological factors are associated with prognosis information preferences.
3175 UK MS Register members (59% of those with active accounts) completed an online survey containing 17 questions about prognosis communication experiences, attitudes and preferences. Participants also completed validated questionnaires measuring coping strategies, tendencies to seek out ('monitor') or avoid ('blunt') information in threatening situations, and MS risk perceptions and reported their clinical and sociodemographic characteristics. Data already held on the MS Register about participants' quality of life, anxiety and depression symptoms and MS impact were obtained and linked to the survey data.
53.1% of participants had never discussed long-term prognosis with healthcare professionals. 54.2% lacked clarity about their long-term prognosis. 76% had strong preferences for receiving long-term prognosis information. 92.8% were interested in using tools that generate personalised predictions. Most participants considered prognostication useful for decision-making. Participants were more receptive to receiving prognosis information at later time-points, versus at diagnosis. A comprehensive set of sociodemographic, clinical and psychological variables predicted only 7.9% variance in prognosis information preferences.
People with MS have an appetite for individualised long-term prognosis forecasting and their need for information is frequently unmet. Clinical studies deploying and evaluating interventions to support prognostication in MS are now needed. This study indicates suitable contexts and patient preferences for initial trials of long-term prognosis tools in clinical settings.
多发性硬化症（MS）的病程具有多样性和不确定性。最近开发的分析处理工具利用大型纵向患者数据库，有利于进行个性化的长期预后估计。这有可能改善共同的治疗决策和心理调整。然而，关于多发性硬化症患者对预后沟通和预测的看法的研究有限。本研究调查了多发性硬化症患者的预后沟通经验和偏好，并探讨了临床、人口统计学和心理因素是否与预后信息偏好相关。
3175 名英国多发性硬化症登记处成员（占活跃账户的 59%）完成了一项在线调查，其中包含 17 个关于预后沟通经验、态度和偏好的问题。参与者还完成了测量应对策略、在威胁情况下寻求（“监控”）或回避（“生硬”）信息倾向以及多发性硬化症风险感知的验证性问卷，并报告了他们的临床和社会人口统计学特征。从多发性硬化症登记处获得并链接到调查数据的是参与者的生活质量、焦虑和抑郁症状以及多发性硬化症影响的数据。
53.1%的参与者从未与医疗保健专业人员讨论过长期预后。54.2%的人对他们的长期预后不清楚。76%的人强烈偏好接受长期预后信息。92.8%的人有兴趣使用生成个性化预测的工具。大多数参与者认为预测对决策有用。参与者更愿意在以后的时间点而不是在诊断时收到预后信息。一套全面的社会人口统计学、临床和心理变量仅预测了预后信息偏好的 7.9%变化。
多发性硬化症患者对个体化长期预后预测有需求，且他们的信息需求经常得不到满足。现在需要进行临床研究，部署和评估支持多发性硬化症预后预测的干预措施。本研究为在临床环境中首次试用长期预后工具提供了合适的背景和患者偏好。
