Mease Philip J, Husni M Elaine, Siegel Evan, Furst Daniel E, Mcilraith Melissa, Strand Vibeke, Hay M Cameron
Providence Swedish Medical Center, Seattle, Washington.
Cleveland Clinic, Cleveland, Ohio.
ACR Open Rheumatol. 2025 Jan;7(1):e11781. doi: 10.1002/acr2.11781.
This study aimed to expand the understanding of the patient with psoriatic arthritis (PsA) experience and to compare/contrast patient and clinician prioritization of PsA dimensions.
We conducted four patients with PsA focus groups across three US rheumatology practices using mixed methods to identify attributes of PsA important to patients. Combination with extant attributes of PsA identified by a steering committee created a comprehensive list of attributes. In separate patient and physician Delphi exercises, participants distributed 100 points across items on the list according to importance as a dimension of PsA.
Fifty-one items describing PsA were generated. Thirty-eight patients and 13 clinicians completed the last Delphi rating exercise. Patients distributed points across a wider range of items than physicians. Using group mean score per item, prioritization was compared between groups. Items with the top 10 mean scores for both groups included arthritis, disease activity, pain, fatigue, physical function, and spine symptoms. Other prioritized domains showed disparity: access to care, daily activities, stiffness, future health uncertainty, and sleep quality for patients versus specific disease skin and joint manifestations, comorbidities, structural damage, and disease management goals for clinicians.
Although concordance between patient and clinician perspectives regarding "what matters" in PsA was seen, significant areas of discordance were uncovered. Patients highlighted concerns about care access and uncertainty about the future and impact on aspects of life beyond physical symptoms, issues not usually discussed in a clinical visit. These differential prioritizations highlight opportunities for improvement in patient-clinician communications and delineate the need for more patient-centered research.
本研究旨在加深对银屑病关节炎(PsA)患者体验的理解,并比较/对比患者和临床医生对PsA各维度的优先排序。
我们在美国的三家风湿病诊所开展了四次PsA患者焦点小组讨论,采用混合方法确定对患者而言PsA的重要属性。将这些属性与指导委员会确定的PsA现有属性相结合,形成了一份全面的属性清单。在单独的患者和医生德尔菲法练习中,参与者根据其作为PsA一个维度的重要性,在清单上的各项之间分配100分。
生成了51项描述PsA的内容。38名患者和13名临床医生完成了最后一轮德尔菲评分练习。患者分配分数的项目范围比医生更广。使用每项的组平均分数,对两组之间的优先排序进行了比较。两组平均得分最高的前10项包括关节炎、疾病活动度、疼痛、疲劳、身体功能和脊柱症状。其他优先领域存在差异:患者关注的是获得医疗服务、日常活动、僵硬、未来健康不确定性和睡眠质量,而临床医生关注的是特定疾病的皮肤和关节表现、合并症、结构损伤以及疾病管理目标。
虽然在PsA中“重要事项”的患者和临床医生观点之间存在一致性,但也发现了显著的不一致领域。患者强调了对获得医疗服务的担忧以及对未来的不确定性,以及对身体症状之外生活方面的影响,这些问题在临床就诊中通常不会讨论。这些不同的优先排序突出了改善患者与临床医生沟通的机会,并表明需要开展更多以患者为中心的研究。