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首页> 外文期刊>Joint, bone, spine : >Perceptions in 7700 patients with rheumatoid arthritis compared to their families and physicians.
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Perceptions in 7700 patients with rheumatoid arthritis compared to their families and physicians.

机译：与家人和医生相比，在7700名类风湿性关节炎患者中的认知度更高。

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OBJECTIVE: To compare perceptions of patients with rheumatoid arthritis (RA) to those of their families and usual physicians regarding pain and subjective experience of the disease. METHODS: Questionnaires were mailed to patients listed in the files of a non-profit patient organization (Association Francaise des Polyarthritiques). Each patient, one family member (or close friend), and the usual physician were each asked to complete a questionnaire. Concordance among replies made by patients, family/friends, and physicians was evaluated using the kappa coefficient. RESULTS: Questionnaires were sent to 20,468 patients, among whom 7702 (38%) mailed back adequate data. The family member was usually the spouse (70%) and the usual physician a rheumatologist (68%). Joint pain was described by patients as variable (80%) and unpredictable (68%). Patients reported a need to push themselves (86%), frustration (86%), anxiety about possible disease progression (89%), and being prevented from making plans for the future (6%). A negative impact was reported on recreational activities (84%), work (56%), and family life and sexuality (51%). Concordance was excellent for pain severity (kappa>0.90) and good for the main joint-pain characteristics and experience of the disease (kappa>0.70), although family members tended to overestimate, and physicians to underestimate, the intensity of the pain. CONCLUSION: We found good overall agreement between perceptions of patients, their families, and their physicians, despite differences between these last two groups. Our qualitative analysis showed not only a major physical impact of the disease, but also marked negative psychosocial effects.
机译：目的：比较类风湿关节炎（RA）患者及其家人和普通医生对疼痛和主观感受的看法。方法：将问卷调查表邮寄给非营利性患者组织（法国综合体协会）档案中列出的患者。每位患者，一名家庭成员（或密友）和普通医师均被要求填写问卷。使用卡帕系数评估患者，家人/朋友和医生的回复之间的一致性。结果：向20468例患者发送了问卷，其中7702例（38％）邮寄了足够的数据。家庭成员通常是配偶（70％），通常的医师是风湿病医师（68％）。患者将关节痛描述为变量（80％）和不可预测的（68％）。患者报告需要自我推销（86％），沮丧（86％），对可能疾病进展的焦虑（89％），并且无法制定未来计划（6％）。据报告对娱乐活动（84％），工作（56％）以及家庭生活和性行为（51％）有负面影响。尽管家庭成员往往高估了疼痛强度，而医师却低估了疼痛的强度，但一致性对于疼痛的严重程度（kappa> 0.90）和对主要关节疼痛特征和疾病的经历（kappa> 0.70）都非常好。结论：尽管后两组之间存在差异，但我们在患者，他们的家庭和他们的医生的看法之间达成了良好的总体共识。我们的定性分析不仅显示出该疾病的主要生理影响，而且还显示出负面的社会心理影响。

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