Academic Rheumatology Unit, The Courtyard, Bristol Royal Infirmary, Bristol BS2 8HW.
Rheumatology (Oxford). 2014 Apr;53(4):696-703. doi: 10.1093/rheumatology/ket416. Epub 2013 Dec 19.
The objective of this study was to explore patients' experiences of RA daily life while on modern treatments.
The methods of this study comprised semi-structured interviews with 15 RA patients, analysed using inductive thematic analysis.
Four themes suggest patients experience life with RA along a continuum from RA in the background to the foreground of their lives, underpinned by constant actions to maintain balance. Living with RA in the background shows patients experience continuous, daily symptoms, which they mediate through micromanagement (mediating the impact of RA on daily life), while learning to incorporate RA into their identity (redefining me). RA moving into the foreground shows patients experience fluctuating symptoms (unwelcome reminders) that may or may not lead to a flare (trying to make sense of fluctuation). Dealing with RA in the foreground shows how patients attempt to manage RA flares (trying to regain control) and decide to seek medical help only after feeling they are losing control. Patients employ a stepped approach to self-management (mediation ladder) as symptoms increase, with seeking medical help often seen as the last resort. Patients seek to find a balance between managing their fluctuating RA and living their daily lives.
Patients move back and forth along a continuum of RA in the background vs the foreground by balancing self-management of symptoms and everyday life. Clinicians need to appreciate that daily micromanagement is needed, even on current treatment regimes. Further research is needed to quantify the level and impact of daily symptoms and identify barriers and facilitators to seeking help.
本研究旨在探讨接受现代治疗的类风湿关节炎(RA)患者的日常生活体验。
本研究采用半结构式访谈 15 名 RA 患者,采用归纳主题分析进行分析。
四项主题表明,患者的 RA 生活体验沿着一个连续体从 RA 背景到生活前台,其生活受到不断维持平衡的行动支撑。在 RA 背景下生活表明患者经历持续的日常症状,他们通过微观管理(调节 RA 对日常生活的影响)来缓解这些症状,同时学会将 RA 融入自己的身份(重新定义自我)。RA 进入前台表明患者经历波动的症状(不受欢迎的提醒),这些症状可能导致或不导致发作(试图理解波动)。在前台应对 RA 表明患者试图管理 RA 发作(试图重新获得控制),并仅在感到失去控制时才决定寻求医疗帮助。患者采用逐步自我管理(调节阶梯)的方法来应对症状的增加,寻求医疗帮助通常被视为最后的手段。患者试图在管理波动的 RA 和日常生活之间找到平衡。
患者通过平衡症状的自我管理和日常生活在 RA 背景与前台之间来回移动。临床医生需要认识到即使在当前治疗方案下,也需要进行日常的微观管理。需要进一步研究来量化日常症状的水平和影响,并确定寻求帮助的障碍和促进因素。