Cedars-Sinai Center for Outcomes Research and Education (CS-CORE), Division of Health Services Research, Cedars-Sinai Medical Center, 116 N. Robertson Blvd, PACT #800, Los Angeles, CA, USA.
Gehr Family Center for Health Systems Science, Division of Geriatric, Hospital, Palliative and General Internal Medicine, University of Southern California, Los Angeles, CA, USA.
Qual Life Res. 2020 Sep;29(9):2403-2414. doi: 10.1007/s11136-020-02492-8. Epub 2020 Apr 11.
Patients with inflammatory bowel diseases (IBD) experience a variety of symptoms and limitations due to their condition. While many outcome measures are available to assess IBD symptom level and disease activity, individual patients' preferences are usually not accounted for. Individualized outcome measures allow individual patients to select and weigh outcomes based on their relative importance, and have been developed in other medical disciplines. In this study, we explored IBD patients' perspectives on different strategies to prioritize IBD-specific health outcomes.
Existing individualized measures were modified for relevance to IBD patients. We performed six focus groups, in which patients were asked to rate and weigh these measures in a series of exercises and to discuss the pros and cons of five different prioritization methods (Likert scale, ranking, selecting outcomes, distribute points, and using a rotating disk) using a semi-structured approach. A thematic analysis revealed key themes in the data.
Patients' thoughts could be grouped into four key themes with 2-4 subthemes each: (1) prioritizing outcomes; (2) differences between methods; (3) outcomes to include; and (4) practical use. Overall, it was challenging for many patients to prioritize outcomes. Among the different prioritization methods, the rotating disk was perceived as the most intuitive. Patients anticipated that this visualization would also help them communicate with their physician.
In a series of focus groups, a visual rotating disk was found to be an intuitive and holistic way to elicit the relative importance of different outcomes for individual IBD patients.
患有炎症性肠病（IBD）的患者会因病情而出现各种症状和受限。虽然有许多评估 IBD 症状水平和疾病活动的指标，但通常不会考虑到个体患者的偏好。个体化的评估指标可以让个体患者根据自身的相对重要性来选择和权衡结果，并且已经在其他医学领域中得到了发展。在这项研究中，我们探讨了 IBD 患者对不同策略的看法，这些策略旨在确定 IBD 特定的健康结果的优先级。
对现有的个体化指标进行了修改，以使其与 IBD 患者相关。我们进行了六次焦点小组讨论，在这些讨论中，患者被要求在一系列练习中对这些指标进行评分和权衡，并使用半结构化方法讨论五种不同的优先级确定方法（Likert 量表、排序、选择结果、分配分数和使用旋转盘）的优缺点。主题分析揭示了数据中的关键主题。
患者的想法可以分为四个关键主题，每个主题有 2-4 个子主题：（1）确定优先级；（2）方法之间的差异；（3）要包含的结果；（4）实际用途。总的来说，对许多患者来说，确定优先级是具有挑战性的。在不同的优先级确定方法中，旋转盘被认为是最直观的。患者预计这种可视化也将帮助他们与医生进行沟通。
在一系列焦点小组中，发现可视化的旋转盘是一种直观而全面的方法，可以确定个体 IBD 患者对不同结果的相对重要性。
