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类风湿性关节炎和脊柱关节炎中的恐惧与信念:一项定性研究。

Fears and beliefs in rheumatoid arthritis and spondyloarthritis: a qualitative study.

作者信息

Berenbaum Francis, Chauvin Pierre, Hudry Christophe, Mathoret-Philibert Florence, Poussiere Maud, De Chalus Thibault, Dreuillet Caroline, Russo-Marie Françoise, Joubert Jean-Michel, Saraux Alain

机构信息

Sorbonne Universités, UPMC Univ Paris 6, AP-HP, Hôpital Saint-Antoine, Rheumatology Department, Paris, France.

INSERM, Sorbonne Universités, UPMC Univ Paris 6, UMR_S 1136, Pierre Louis Institute of Epidemiology and Public Health, Department of Social Epidemiology, Paris, France.

出版信息

PLoS One. 2014 Dec 4;9(12):e114350. doi: 10.1371/journal.pone.0114350. eCollection 2014.

Abstract

OBJECTIVES

To explore beliefs and apprehensions about disease and its treatment in patients with rheumatoid arthritis and spondyloarthritis.

METHODS

25 patients with rheumatoid arthritis and 25 with spondyloarthritis participated in semi-structured interviews about their disease and its treatment. The interviews were performed by trained interviewers in participants' homes. The interviews were recorded and the main themes identified by content analysis.

RESULTS

Patients differentiated between the underlying cause of the disease, which was most frequently identified as a hereditary or individual predisposition. In patients with rheumatoid arthritis, the most frequently cited triggering factor for disease onset was a psychological factor or life-event, whereas patients with spondyloarthritis tended to focus more on an intrinsic vulnerability to disease. Stress and overexertion were considered important triggering factors for exacerbations, and relaxation techniques were frequently cited strategies to manage exacerbations. The unpredictability of the disease course was a common source of anxiety. Beliefs about the disease and apprehensions about the future tended to evolve over the course of the disease, as did treatment expectations.

CONCLUSIONS

Patients with rheumatoid arthritis and spondyloarthritis hold a core set of beliefs and apprehensions that reflect their level of information about their disease and are not necessarily appropriate. The physician can initiate discussion of these beliefs in order to dispel misconceptions, align treatment expectations, provide reassurance to the patient and readjust disease management. Such a dialogue would help improve standards of care in these chronic and incapacitating diseases.

摘要

目的

探讨类风湿关节炎和脊柱关节炎患者对疾病及其治疗的看法和担忧。

方法

25名类风湿关节炎患者和25名脊柱关节炎患者参与了关于其疾病及其治疗的半结构化访谈。访谈由经过培训的访谈者在参与者家中进行。访谈进行了录音,并通过内容分析确定了主要主题。

结果

患者区分了疾病的潜在病因,最常被认为是遗传或个体易感性。在类风湿关节炎患者中,最常被提及的疾病发作触发因素是心理因素或生活事件,而脊柱关节炎患者则倾向于更关注疾病的内在易感性。压力和过度劳累被认为是病情加重的重要触发因素,放松技巧是经常被提及的控制病情加重的策略。疾病进程的不可预测性是焦虑的常见来源。对疾病的看法和对未来的担忧往往会随着疾病的发展而演变,治疗期望也是如此。

结论

类风湿关节炎和脊柱关节炎患者持有一系列核心信念和担忧,这些信念和担忧反映了他们对疾病的了解程度,且不一定恰当。医生可以发起关于这些信念的讨论,以消除误解、调整治疗期望、安抚患者并重新调整疾病管理。这样的对话将有助于提高这些慢性致残性疾病的护理标准。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/bdcc/4256228/fde228aaee2a/pone.0114350.g001.jpg

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