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本文引用的文献

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Listening to Lyrica: contested illnesses and pharmaceutical determinism.倾听乐瑞卡:有争议的疾病与药物决定论。
Soc Sci Med. 2011 Sep;73(6):833-42. doi: 10.1016/j.socscimed.2011.05.055. Epub 2011 Jul 28.
2
[Fibromyalgia: Patient perception on their disease and health system. Qualitative research study].[纤维肌痛:患者对其疾病及医疗系统的认知。定性研究]
Reumatol Clin. 2010 Jan-Feb;6(1):16-22. doi: 10.1016/j.reuma.2009.04.008. Epub 2009 Sep 13.
3
New and emerging therapeutic agents for the treatment of fibromyalgia: an update.治疗纤维肌痛症的新型和新兴治疗药物:更新。
J Pain Res. 2010 Jul 22;3:89-103. doi: 10.2147/jpr.s6792.
4
Fibromyalgia syndrome: prevalence, pharmacological and non-pharmacological interventions in outpatient health care. An analysis of statutory health insurance data.纤维肌痛综合征:在门诊医疗保健中外用药物和非药物干预的流行情况。法定健康保险数据的分析。
Joint Bone Spine. 2011 Jan;78(1):80-4. doi: 10.1016/j.jbspin.2010.05.003. Epub 2010 Jul 31.
5
Fibromyalgia syndrome: practical strategies for improving diagnosis and patient outcomes.纤维肌痛综合征:改善诊断和患者结局的实用策略。
Am J Med. 2010 Jun;123(6):S2. doi: 10.1016/j.amjmed.2010.04.001.
6
A qualitative exploration of carers' and 'patients' experiences of fibromyalgia: one illness, different perspectives.对纤维肌痛患者及其照料者经历的质性探索:同一种疾病,不同视角
Musculoskeletal Care. 2010 Jun;8(2):68-77. doi: 10.1002/msc.167.
7
[Qualitative research on the conceptualization around the frequent attendance by primary medical staff].[关于基层医务人员频繁就诊概念化的定性研究]
Rev Esp Salud Publica. 2009 Nov-Dec;83(6):863-75. doi: 10.1590/s1135-57272009000600009.
8
Strategies for managing fibromyalgia.纤维肌痛管理策略。
Am J Med. 2009 Dec;122(12 Suppl):S31-43. doi: 10.1016/j.amjmed.2009.09.009.
9
Preliminary validity of the barriers to treatment adherence questionnaire in fibromyalgia: combining quantitative and focus group data.纤维肌痛症治疗依从性障碍问卷的初步效度:整合定量与焦点小组数据
Psychol Rep. 2009 Oct;105(2):447-60. doi: 10.2466/PR0.105.2.447-460.
10
Patients' experiences of living with and receiving treatment for fibromyalgia syndrome: a qualitative study.纤维肌痛综合征患者的患病和治疗体验:一项定性研究。
BMC Musculoskelet Disord. 2009 Oct 7;10:124. doi: 10.1186/1471-2474-10-124.

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.

DOI:10.1155/2013/742510
PMID:23457682
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3665433/
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。