Fibromyalgia: Patient perception on their disease and health system. Qualitative research study

Escudero-Carretero, María José; Toyos, Noelia García; Prieto-Rodríguez, María Ángeles; Pérez-Corral, Olivia; March-Cerdá, Joan Carles; López-Doblas, Manuela

doi:10.1016/s2173-5743(10)70005-8

Cited by 10 publications

(20 citation statements)

References 26 publications

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“…Our participants did not find company, interest, understanding and support in professionals (Escudero‐Carretero et al . ). Nurses, who understand that it is their responsibility to talk to patients about their sexual concerns, can help women with FMS to adapt (Saunamäki et al .…”

Section: Discussionmentioning

confidence: 97%

Perceptions about the sexuality of women with fibromyalgia syndrome: a phenomenological study

Jiménez¹,

Fernández‐Sola

Hernández‐Padilla

et al. 2017

Journal of Advanced Nursing

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Despite limitations, sexuality is important for the identity and quality of life of women with fibromyalgia syndrome. Together with the physical symptomology, guilt, fear and a lack of understanding compromise the coping process. Women need the support of their partner, their socio-family environment and health professionals. Nurses can aid the successful adjustment to sexual problems related to fibromyalgia syndrome.

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Section: Discussionmentioning

confidence: 97%

Perceptions about the sexuality of women with fibromyalgia syndrome: a phenomenological study

Jiménez¹,

Fernández‐Sola

Hernández‐Padilla

et al. 2017

Journal of Advanced Nursing

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“…frequently complained of a lack of understanding and support among professionals (26,32,33). Furthermore, when there is no agreement on the diagnosis, causes or treatment, patients may become so frustrated that they do not even complete the therapy prescribed (34).…”

mentioning

confidence: 99%

“…To date, studies on fibromyalgia have mainly focused on the diagnostic approach and therapeutic management or on the health professional-patient relationship (15,26,32,38). However, these three aspects have not been analyzed together in the scientific literature.…”

mentioning

confidence: 99%

Patients’ and Professionals’ Views on Managing Fibromyalgia

Briones-Vozmediano

Vives‐Cases

Ronda

et al. 2013

Pain Research and Management

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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.

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“…People with fibromyalgia reported being diagnosed by an 'exclusion' approach, meaning that they had to undergo many tests, referrals to a number of different healthcare professionals and time-consuming healthcare appointments [10,15,18,21,30,44,51,69]. Patients reported that this diagnostic process often took years [15,16,20,30,69]. A diagnosis did not automatically mean that patients felt relieved [10,20,23,41,67].…”

Section: Patient Care Experiencesmentioning

confidence: 99%

“No one wants to look after the fibro patient”. Understanding models, and patient perspectives, of care for fibromyalgia: reviews of current evidence

Doebl

Macfarlane

Hollick

2020

Pain

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Fibromyalgia is a common and complex long-term pain condition. Despite advancements in our understanding and treatment of fibromyalgia, patients report patchy health care provision and frustrating journeys through the health care system. To inform how best to deliver care, we undertook 2 narrative reviews examining existing evidence on (1) models of care for fibromyalgia and (2) patients' experiences, preferences, and unmet needs regarding their health care. Seven databases were systematically searched. Quantitative data was narratively synthesised and qualitative data thematically analysed. No evidence-based model of care covering the patient journey through the entire health care system was identified. Limited evidence suggests no clear benefit for ongoing care in secondary care settings. Patients with fibromyalgia report difficult interactions with the health care system that might equally be expressed by those with other longterm conditions, such as inconsistent and poorly coordinated care. However, they also face unique problems; fibromyalgia was often not viewed as a real condition, resulting in difficult encounters with health care staff, in particular not feeling believed or listened to. Significant delays in diagnosis were commonplace. Positive care experiences such as being listened to and shared decision-making made patients feeling better informed, well supported, and more satisfied. There is little evidence to inform how best to organise health care for patients with fibromyalgia and ensure care is delivered in a coordinated and consistent way. These findings provide a strong rationale for developing a new model of care for fibromyalgia.

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Fibromyalgia: Patient perception on their disease and health system. Qualitative research study

Cited by 10 publications

References 26 publications

Perceptions about the sexuality of women with fibromyalgia syndrome: a phenomenological study

Perceptions about the sexuality of women with fibromyalgia syndrome: a phenomenological study

Patients’ and Professionals’ Views on Managing Fibromyalgia

“No one wants to look after the fibro patient”. Understanding models, and patient perspectives, of care for fibromyalgia: reviews of current evidence

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