Pouchot Jacques, Le Parc Jean-Marie, Queffelec Laurence, Sichère Patrick, Flinois Alain
Internal Medicine Department, European Georges Pompidou Teaching Hospital, 20 rue Leblanc, Paris 75015, France.
Joint Bone Spine. 2007 Dec;74(6):622-6. doi: 10.1016/j.jbspin.2006.11.024. Epub 2007 Jul 19.
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.
Questionnaires were mailed to patients listed in the files of a non-profit patient organization (Association Française 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.
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.
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.
比较类风湿关节炎（RA）患者与其家人及普通医生对疼痛及疾病主观体验的认知。
向一个非营利性患者组织（法国多关节炎协会）档案中列出的患者邮寄问卷。要求每位患者、一名家庭成员（或密友）及普通医生分别填写一份问卷。使用kappa系数评估患者、家人/朋友及医生回复之间的一致性。
向20468名患者发送了问卷，其中7702名（38%）寄回了充分的数据。家庭成员通常是配偶（70%），普通医生是风湿病学家（68%）。患者将关节疼痛描述为多变的（80%）和不可预测的（68%）。患者报告需要强迫自己（86%）、感到沮丧（86%）、对疾病可能进展感到焦虑（89%），以及未来计划受到阻碍（6%）。报告称对娱乐活动（84%）、工作（56%）以及家庭生活和性生活（51%）有负面影响。对于疼痛严重程度，一致性极佳（kappa>0.90），对于主要关节疼痛特征和疾病体验，一致性良好（kappa>0.70），尽管家庭成员往往高估疼痛强度，而医生往往低估疼痛强度。
尽管患者与其家人及医生这两组之间存在差异，但我们发现他们的认知总体上有良好的一致性。我们的定性分析表明，该疾病不仅对身体有重大影响，而且对心理社会也有显著的负面影响。
