University of Nebraska Medical Center, Omaha, NE, USA.
University of Tennessee-Knoxville, Knoxville, TN, USA.
Clin Nurs Res. 2023 Jan;32(1):40-48. doi: 10.1177/10547738221075784. Epub 2022 Feb 7.
Rheumatoid arthritis is highly individualized in terms of its flare ups and periods of remission. Each patient's unique experience requires a high level of personalization in terms of treatment making it necessary to understand what their goals for living are. This study explores patient perceptions on how the burden of RA shapes patients' goals for living and their preferences for symptom and side-effect management within the United States. Fifteen patients diagnosed with RA with varying lengths of diagnosis were interviewed. A thematic analysis was conducted to construct a conceptual framework. Emerging themes identified disease burdens as: (1) inability to perform essential needs, (2) negative feelings about disease, and (3) its influence on relationships. These burdens shaped desired goals for living which guided the symptom and side-effect priorities the patient wanted managed. Practitioners should consider patient goals and preferences in conjunction with disease progression when engaging in treatment decisions.
类风湿关节炎在发作和缓解期具有高度的个体差异。每位患者独特的经历都需要在治疗方面进行高度个性化的处理，这就需要了解他们的生活目标是什么。本研究探讨了美国患者对 RA 负担如何影响他们的生活目标以及对症状和副作用管理的偏好的看法。对 15 名患有 RA 且诊断时间长短不一的患者进行了采访。进行了主题分析以构建概念框架。确定的疾病负担有：（1）无法满足基本需求，（2）对疾病的负面感受，（3）对人际关系的影响。这些负担塑造了患者期望的生活目标，从而指导了他们希望管理的症状和副作用的优先级。医生在进行治疗决策时应考虑患者的目标和偏好以及疾病的进展。
