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患者和专业人员对纤维肌痛管理的看法。

Patients' and professionals' views on managing fibromyalgia.

机构信息

Department of Community Nursing, Preventive Medicine & Public Health and History of Science, Alicante, Spain.

出版信息

Pain Res Manag. 2013 Jan-Feb;18(1):19-24. doi: 10.1155/2013/742510.

Abstract

BACKGROUND

Managing fibromyalgia is a challenge for both health care systems and the professionals caring for these patients, due, in part, to the fact that the etiology of this disease is unknown, its symptoms are not specific and there is no standardized treatment.

OBJECTIVE

The present study examines three aspects of fibromyalgia management, namely diagnostic approach, therapeutic management and the health professional-patient relationship, to explore specific areas of the health care process that professionals and patients may consider unsatisfactory.

METHODS

A qualitative study involving semistructured interviews with 12 fibromyalgia patients and nine health professionals was performed.

RESULTS

The most commonly recurring theme was the dissatisfaction of both patients and professionals with the management process as a whole. Both groups expressed dissatisfaction with the delay in reaching a diagnosis and obtaining effective treatment. Patients reported the need for greater moral support from professionals, whereas the latter often felt frustrated and of little help to patients. Patients and professionals agreed on one point: the uncertainty surrounding the management of fibromyalgia and, especially, its etiology.

CONCLUSION

The present study contributes to a better understanding regarding why current management of fibromyalgia is neither effective nor satisfactory. It also provides insight into how health professionals can support fibromyalgia patients to achieve beneficial results. Health care services should offer greater support for these patients in the form of specific resources such as fibromyalgia clinics and health professionals with increased awareness of the disease.

摘要

背景

由于这种疾病的病因不明,其症状不具有特异性,也没有标准化的治疗方法,因此管理纤维肌痛症对医疗保健系统和照顾这些患者的专业人员来说都是一个挑战。

目的

本研究通过探讨纤维肌痛症管理的三个方面,即诊断方法、治疗管理和医患关系,来探索医疗保健过程中专业人员和患者可能认为不满意的具体领域。

方法

对 12 名纤维肌痛症患者和 9 名卫生专业人员进行了半结构化访谈的定性研究。

结果

最常出现的主题是患者和专业人员对整个管理过程的不满。两组都对诊断和获得有效治疗的延迟表示不满。患者表示需要专业人员提供更多的道德支持,而后者则常常感到沮丧,对患者帮助不大。患者和专业人员在一点上达成了共识:纤维肌痛症的管理存在不确定性,尤其是其病因。

结论

本研究有助于更好地理解为什么当前对纤维肌痛症的管理既无效也不满意。它还深入了解了卫生专业人员如何支持纤维肌痛症患者取得有益的结果。医疗保健服务应以纤维肌痛症诊所和对该疾病有更多认识的专业人员等特定资源的形式为这些患者提供更大的支持。

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