Newsum Elize C, van der Helm-van Mil Annette H M, Kaptein Adrian A
Department of Rheumatology, Leiden University Medical Centre, C-01-046, PO Box 9600, 2300 RC, Leiden, Netherlands.
Department of Medical Psychology, Leiden University Medical Centre, Leiden, Netherlands.
Clin Rheumatol. 2016 May;35(5):1347-52. doi: 10.1007/s10067-015-3038-3. Epub 2015 Aug 15.
The rheumatology field is moving towards identifying individuals with an increased risk for rheumatoid arthritis (RA) at a stage when arthritis is still absent but persons having clinically suspect arthralgia (CSA). Incorporating patients' views in rheumatologic care is pivotal; however, the views of persons with CSA on their condition are unknown. We aimed to help fill this gap by exploring illness perceptions of persons with CSA and their views on hypothetical prognoses for developing RA. Persons with CSA were invited to participate in a semi-structured focus group discussion. Illness perceptions according to the Common Sense Model (CSM) and four a priori formulated themes were explored in detail during the group discussion. The discussion was audio-taped and transcribed verbatim. Transcripts were analysed in an interpretative phenomenological approach manner, on the basis of the dimensions of the CSM by three researchers independently. The views of four participants with CSA were explored during one focus group discussion. Four dimensions of the CSM were mainly observed: Identity, Consequences, Personal Control and Concern. None of the patients identified themselves as being a patient. They did experience pain and impairments in daily functioning and were concerned that their symptoms would progress. In the absence of physician-initiated treatment, some patients changed lifestyle in order to reduce pain and to promote health. Patients unanimously said that they could not interpret prognostic information on RA development expressed in hypothetical chances. Persons with CSA do not consider themselves patients. Prognostic information related to the development of RA based on risk percentages was considered as not useful by persons with CSA. Understanding of the illness perceptions of persons with CSA by health care professionals might improve medical management and facilitate shared decision-making.
风湿病领域正朝着在关节炎尚未出现但有临床疑似关节痛(CSA)的阶段识别类风湿关节炎(RA)风险增加的个体发展。将患者的观点纳入风湿病护理至关重要;然而,CSA患者对自身病情的看法尚不清楚。我们旨在通过探索CSA患者的疾病认知及其对发展为RA的假设性预后的看法来填补这一空白。邀请CSA患者参加半结构化焦点小组讨论。在小组讨论中详细探讨了基于常识模型(CSM)的疾病认知和四个预先制定的主题。讨论进行了录音并逐字转录。三位研究人员根据CSM的维度,以解释现象学方法独立分析了转录本。在一次焦点小组讨论中探讨了四名CSA患者的观点。主要观察到CSM的四个维度:身份认同、后果、个人控制和担忧。没有患者将自己视为患者。他们确实经历了疼痛和日常功能受损,并担心症状会进展。在没有医生启动治疗的情况下,一些患者改变了生活方式以减轻疼痛和促进健康。患者一致表示,他们无法理解以假设概率表达的关于RA发展的预后信息。CSA患者不认为自己是患者。CSA患者认为基于风险百分比的与RA发展相关的预后信息没有用处。医疗保健专业人员了解CSA患者的疾病认知可能会改善医疗管理并促进共同决策。