类风湿关节炎患者在面对医疗或非医疗治疗决策时，什么对他们重要？
What Matters to Patients with Rheumatoid Arthritis When Facing Medical or Non-Medical Treatment Decisions?
作者信息
Cornelissen Lisa Emily, van der Mark Elise J, Pennings Patricia, Maat Bertha, Foekens Theo, Willemsen-de Mey Gerardine, Voogdt-Pruis Helene R
机构信息
National Association ReumaZorg Nederland, Nijmegen, 6500 AB, Netherlands.
VU Amsterdam, Athena Institute, Amsterdam, 1081 HV, Netherlands.
出版信息
Patient Prefer Adherence. 2021 Aug 24;15:1827-1841. doi: 10.2147/PPA.S322257. eCollection 2021.
BACKGROUND
In rheumatoid arthritis care, patients and healthcare professionals regularly face health treatment decisions. Sorting out what matters to a patient as being relevant to a specific decision is therefore essential.
METHODS
An explorative mixed-methods study was performed to investigate patients' values for health treatment decisions and their importance in order to develop a future decision aid on value clarification. Ten semi-structured interviews with patient partners were conducted followed by an online survey among the broader population of patients. Qualitative content analysis was performed. Data from the online survey were analysed descriptively and quantitatively.
RESULTS
According to patients, 17 important health treatment decisions in rheumatoid arthritis care can occur. The most commonly reported decisions concerned the use of medication. A variety of values may guide patients' health treatment decisions. We found 66 values among four domains of values - decisional, situational, external and global. Among decisional values, reported main values were a) effectiveness of treatment on inflammation, functioning, pain and fatigue; b) avoiding negative side-effects; and c) keeping in good physical condition. In addition, situational values turned out to be a) staying independent; b) being able to meet people; and c) leading as normal a life as possible. Furthermore, patients prefer healthcare professionals who a) take comorbidity into account, b) have enough time, and c) take the patient seriously in their choices - the external values. Finally, as global values were expressed a) autonomy; b) self-image, and c) intimacy. All values are specified by underlying quotes, for example, the value effectiveness on inflammation; "That inflammation has got to go, because you've then got the risk that you'll develop all kinds of things in the course of time".
CONCLUSION
A variety of values may guide patients' health treatment decisions within rheumatoid arthritis care. Patients and professionals should discuss patients' values continuously.
背景
在类风湿关节炎护理中，患者和医护人员经常面临健康治疗决策。因此，梳理出对患者而言与特定决策相关的重要事项至关重要。
方法
开展了一项探索性混合方法研究，以调查患者对健康治疗决策的价值观及其重要性，以便开发未来关于价值观澄清的决策辅助工具。对患者伴侣进行了10次半结构化访谈，随后在更广泛的患者群体中进行了在线调查。进行了定性内容分析。对在线调查的数据进行了描述性和定量分析。
结果
患者认为，类风湿关节炎护理中可能出现17项重要的健康治疗决策。最常报告的决策涉及药物使用。多种价值观可能指导患者的健康治疗决策。我们在四个价值观领域——决策性、情境性、外部性和全局性中发现了66种价值观。在决策性价值观中，报告的主要价值观是：a）治疗对炎症、功能、疼痛和疲劳的有效性；b）避免负面副作用；c）保持良好的身体状况。此外，情境性价值观结果是：a）保持独立；b）能够与人交往；c）尽可能正常地生活。此外，患者更喜欢以下医护人员：a）考虑合并症；b）有足够时间；c）认真对待患者的选择——外部性价值观。最后，作为全局性价值观表达的是：a）自主性；b）自我形象；c）亲密关系。所有价值观都由相关引语具体说明，例如，炎症方面的有效性价值观；“炎症必须消除，因为随着时间的推移，你有患上各种疾病的风险”。
结论
在类风湿关节炎护理中，多种价值观可能指导患者的健康治疗决策。患者和专业人员应持续讨论患者的价值观。
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