From Mohammed Vth University, URAC 30, Department of Rheumatology, El Ayachi Hospital, Salé, Faculty of Medicine and Pharmacy, Rabat, Morocco.
J Clin Rheumatol. 2017 Aug;23(5):262-266. doi: 10.1097/RHU.0000000000000478.
To compare perceptions of patients with rheumatoid arthritis (RA) to those of their families regarding pain and subjective experience of the disease.
It was a monocentric study, including 120 RA patients (according to the American College of Rheumatology criteria). The questionnaires were developed during meetings of RA patients, rheumatologists, and methodologists while referring to the literature. The patient questionnaire comprised 22 items organized in 4 sections: pain, perceived experience of the disease, activity restrictions, and help received. Concordance among patients, family, and friends replies was evaluated using the kappa coefficient.
The mean age was 42 ± 12 years with female predominance 110 (91.7%). The family member was usually the spouse (46.3%). Joint pain was described by patients as spontaneous (98.3%), unpredictable (95.9%), and variable (95.1%). RA had negatively affected work-related activities (100%), recreational activities (98.4%), family life (87.6%), relationships with friends (77.7%), sexual activities (50.4%), plans for having children (47.1%), and intimate relationships (46.3%). Concordance between patients and family perceptions was mediocre for pain severity (kappa: 0.3) and main joint-pain characteristics, excellent for majority items of experience of the disease (kappa > 0.80). Family tended to underestimate pain severity and to overestimate negative effects of RA on patient's life.
We found a good agreement between patients' and family members' perceptions. It is essential that any family support be in accordance with patients' needs. Our qualitative analysis objectified, in addition to a major physical impact of the disease, a negative psychosocial effect.
比较类风湿关节炎（RA）患者与其家属对疼痛的感知和疾病主观体验的差异。
这是一项单中心研究，纳入了 120 名 RA 患者（符合美国风湿病学会标准）。问卷是在 RA 患者、风湿病学家和方法学家的会议上制定的，同时参考了文献。患者问卷包括 22 个项目，分为 4 个部分：疼痛、对疾病的主观体验、活动受限和获得的帮助。通过kappa 系数评估患者、家属和朋友回答的一致性。
患者的平均年龄为 42±12 岁，女性占 110 例（91.7%）。家庭成员通常是配偶（46.3%）。患者描述关节疼痛是自发性的（98.3%）、不可预测的（95.9%）和多变的（95.1%）。RA 严重影响了患者的工作相关活动（100%）、娱乐活动（98.4%）、家庭生活（87.6%）、与朋友的关系（77.7%）、性生活（50.4%）、生育计划（47.1%）和亲密关系（46.3%）。患者和家属对疼痛严重程度的感知一致性中等（kappa：0.3），对疾病体验的大部分项目的感知一致性极好（kappa＞0.80）。家属往往低估疼痛的严重程度，高估 RA 对患者生活的负面影响。
我们发现患者和家属的感知存在较好的一致性。任何家庭支持都必须符合患者的需求。我们的定性分析不仅客观反映了疾病对身体的主要影响，还反映了疾病对患者心理社会的负面影响。
