Leung Jerik, Ra Jennifer, Baker Elizabeth A, Kim Alfred H J
Division of Rheumatology, Department of Medicine, Washington University School of Medicine, Saint Louis, Missouri, USA.
Department of Behavioral Science and Health Education, College for Public Health and Social Justice, Saint Louis University, Saint Louis, Missouri, USA.
ACR Open Rheumatol. 2019 May;1(3):135-144. doi: 10.1002/acr2.1020. Epub 2019 Apr 22.
The patient-specific experience of living with SLE is underreported, particularly when studying factors associated with health-related quality of life (HRQOL). Recent work has suggested that biomedical interventions are only partially predictive of HRQOL measures. A qualitative analysis of patient-specific experiences can uncover additional root causes of impaired HRQOL in SLE populations beyond the scope of quantitative questionnaires.
Consented adult patients with American College of Rheumatology- or Systemic Lupus International Collaborating Clinics-classified SLE were recruited. Ten semi-structured interviews were conducted across six participants. Interviews were audio recorded, transcribed, and analyzed using an iterative process. Findings were presented to an interactive public forum with SLE patients family members and friends of patients, and health care professionals to assess accuracy.
Four themes emerged from the interviews: 1) ambiguity, inconsistency, and lack of symptom predictability due to SLE disease courses, 2) poor communication with family/friends/partners, and poor bi-directional communication between health care providers and patients (informational support), 3) lack of validation for patients' experiences (appraisal support), and 4) problematic aspects of social support including negative support and patients' inability to reciprocate support due to role changes. Data also indicate a reciprocal association between appraisal and informational sources of support.
Findings indicate that inadequate appraisal and informational support from informal and formal sources are salient factors influencing HRQOL among SLE patients. Findings also point to the necessity of integrating community organizations, physicians, and friends and family of SLE patients into capacity building interventions aimed at enhancing these sources of social support.
系统性红斑狼疮（SLE）患者的个体生活体验报道不足，尤其是在研究与健康相关生活质量（HRQOL）相关的因素时。近期研究表明，生物医学干预仅能部分预测HRQOL指标。对患者个体体验进行定性分析，能够揭示定量问卷调查范围之外，SLE患者HRQOL受损的其他根本原因。
招募了经美国风湿病学会或系统性红斑狼疮国际协作诊所分类诊断为SLE的成年患者并获得其同意。对6名参与者进行了10次半结构化访谈。访谈进行了录音、转录，并采用迭代过程进行分析。研究结果在一个互动式公共论坛上向SLE患者、患者的家人和朋友以及医疗保健专业人员展示，以评估其准确性。
访谈中出现了四个主题：1）由于SLE病程导致的模糊性、不一致性和症状不可预测性；2）与家人/朋友/伴侣沟通不畅，以及医疗服务提供者与患者之间双向沟通不良（信息支持）；3）患者体验缺乏认可（评估支持）；4）社会支持方面存在问题，包括负面支持以及由于角色变化患者无法回报支持。数据还表明评估支持和信息支持来源之间存在相互关联。
研究结果表明，来自非正式和正式来源的评估和信息支持不足是影响SLE患者HRQOL的重要因素。研究结果还指出，有必要将社区组织、医生以及SLE患者的朋友和家人纳入能力建设干预措施，以增强这些社会支持来源。
