Prognostic risk estimates of patients with multiple sclerosis and their physicians: comparison to an online analytical risk counseling tool.
Prognostic risk estimates of patients with multiple sclerosis and their physicians: comparison to an online analytical risk counseling tool.
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多发性硬化症患者及其医生的预后风险估计：与在线分析风险咨询工具进行比较。
DOI：
10.1371/journal.pone.0059042
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发表时间：
2013
期刊：
影响因子：
3.7
通讯作者：
Daumer M
中科院分区：
文献类型：
--
作者：
Heesen C;Gaissmaier W;Nguyen F;Stellmann JP;Kasper J;Köpke S;Lederer C;Neuhaus A;Daumer M
多发性硬化症（MS）的预后咨询是困难的，因为疾病进展的高变异性。与此同时，患者和医生越来越多地面临在早期阶段做出治疗决定的问题，这需要考虑个人的利益，以在治疗的利益和危害之间取得良好的平衡。因此，重要的是要了解患者和医生如何估计预后风险，以及这些估计是否以及如何改进。一个在线分析处理（OLAP）工具的基础上汇总数据安慰剂队列的临床试验提供了短期预后估计，可用于个人风险咨询。本研究的目的是澄清，如果个性化的预后信息所提出的OLAP工具被认为是有用的和有意义的患者。此外，我们使用OLAP工具来评估患者和医生的风险估计。在这个评估过程中，我们评估了MS患者（最终n = 110）和他们的医生（n = 6）的短期预后风险估计，并将其与OLAP的估计值进行比较。 患者对OLAP工具的评价是可以理解和接受的，但只有中等兴趣。事实证明，患者、医生和OLAP工具对患者的疾病进展风险进行了相似的排名。患者和医生的估计与那些疾病协变量的相关性最强，OLAP工具的估计也与这些疾病协变量的相关性最强。接触OLAP工具并没有改变患者的风险估计。虽然OLAP工具被评为可理解和可接受的，它只是适度的兴趣，并没有改变患者的预后估计。然而，结果表明，患者对他们的预后有一些想法，哪些因素在这方面最重要。未来的OLAP工作应该评估长期预后估计，并澄清其对患者和医生面临的治疗决策的有用性。
Prognostic counseling in multiple sclerosis (MS) is difficult because of the high variability of disease progression. Simultaneously, patients and physicians are increasingly confronted with making treatment decisions at an early stage, which requires taking individual prognoses into account to strike a good balance between benefits and harms of treatments. It is therefore important to understand how patients and physicians estimate prognostic risk, and whether and how these estimates can be improved. An online analytical processing (OLAP) tool based on pooled data from placebo cohorts of clinical trials offers short-term prognostic estimates that can be used for individual risk counseling. The aim of this study was to clarify if personalized prognostic information as presented by the OLAP tool is considered useful and meaningful by patients. Furthermore, we used the OLAP tool to evaluate patients' and physicians' risk estimates. Within this evaluation process we assessed short-time prognostic risk estimates of patients with MS (final n = 110) and their physicians (n = 6) and compared them with the estimates of OLAP. Patients rated the OLAP tool as understandable and acceptable, but to be only of moderate interest. It turned out that patients, physicians, and the OLAP tool ranked patients similarly regarding their risk of disease progression. Both patients' and physicians' estimates correlated most strongly with those disease covariates that the OLAP tool's estimates also correlated with most strongly. Exposure to the OLAP tool did not change patients' risk estimates. While the OLAP tool was rated understandable and acceptable, it was only of modest interest and did not change patients' prognostic estimates. The results suggest, however, that patients had some idea regarding their prognosis and which factors were most important in this regard. Future work with OLAP should assess long-term prognostic estimates and clarify its usefulness for patients and physicians facing treatment decisions.
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影响因子：
11.2
作者：
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通讯作者：
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影响因子：
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