Diagnostic experience of patients with fibromyalgia – A meta-ethnography

Mengshoel, Anne Marit; Sim, Julius; Ahlsen, Birgitte; Madden, Sue

doi:10.1177/1742395317718035

Cited by 47 publications

(50 citation statements)

References 60 publications

(231 reference statements)

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“…This phase incorporates the rationale and aims of the study. Meta-ethnography, first developed by Noblit and Hare [6] has provided insight into a range of healthcare experiences including chronic musculoskeletal pain [10], rheumatoid arthritis [11], fibromyalgia [12], osteoporosis [13] and chronic pelvic pain [14]. There are various methods for QES [15][16][17][18][19].…”

Section: Selecting Meta-ethnography and Getting Started (Stage 1)mentioning

confidence: 99%

A meta-ethnography to understand the experience of living with urinary incontinence: ‘is it just part and parcel of life?’

Toye

Barker

2020

BMC Urol

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Background: Urinary incontinence (UI) is highly prevalent and affects the lives of many men and women. We aimed to conduct a qualitative evidence synthesis (QES) to explore the experience of living with UI and to develop a conceptual model that can help us to understand this experience, and the potential barriers to appropriate healthcare. Methods: We used the methods of meta-ethnography developed by Noblit and Hare and recently refined for larger studies. Meta-ethnography involves identifying concepts from the studies and abstracting these concepts into a line of argument. We searched for studies that explored the experience of adults with UI. We used the GRADE-CERQual framework to assess confidence in review findings.Results: We screened 2307 titles, 429 abstracts, 107 full texts and included 41 studies (36 unique samples) in the synthesis. We organised the concepts into 26 conceptual categories, which we further abstracted into 6 themes: (1) Am I ill or is this normal? (2) It effects who I am and how I feel; (3) I feel stigmatised, ashamed and guilty; (4) talking can be difficult but it can help; (5) keeping incontinence under control; (6) have I got to the point that I need help? Our model conceptualises living with UI as navigating antagonists: Is UI normal or am I ill? Do I need help or am I managing? Do I keep UI to myself (and manage alone) or do I tell other people (and get the support that I need)? Do I use control strategies that focus on concealing (avoid risky situations, wear pads) versus, I use strategies that focus on improving the bodily function to improve continence. Our model highlights the experience of stigma, shame and guilt which exert a pull towards concealment. Conclusions:The culture of secrecy and profound sense of shame is barrier to seeking help. An environment which reduces the shame and stigma of UI may help people to switch the focus to strategies that will improve continence, rather than conceal incontinence.

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Section: Selecting Meta-ethnography and Getting Started (Stage 1)mentioning

confidence: 99%

A meta-ethnography to understand the experience of living with urinary incontinence: ‘is it just part and parcel of life?’

Toye

Barker

2020

BMC Urol

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“…Considering that opioid receptors and lymphocytes activity could be influenced by opioid treatment [19][20][21][22][23][24][25][26][27][28][29][30][31][32][33][34][35], patients currently being treated with opioids were not enrolled. However, information about the assumption of pharmacological therapy was collected.…”

Section: Participantsmentioning

confidence: 99%

“…Neither specific diagnostic laboratory tests nor biomarkers are available to confirm FM diagnosis, especially in its specificity of chronic widespread pain (CWP), excluding some groundbreaking tests available in the near future [16]. In this context, delays and misdiagnosis may frequently occur, with relevant consequences on patients' life and treatment efficacy, as well as socioeconomic burdens on patients and the health care system [17][18][19][20][21]. For these reasons, the identification of objective and specific FM biomarkers is a priority for correct diagnosis.…”

Section: Introductionmentioning

confidence: 99%

Identification of MOR-Positive B Cell as Possible Innovative Biomarker (Mu Lympho-Marker) for Chronic Pain Diagnosis in Patients with Fibromyalgia and Osteoarthritis Diseases

Raffaeli

Malafoglia

Bonci

et al. 2020

IJMS

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Fibromyalgia (FM) diagnosis follows the American College of Rheumatology (ACR) criteria, based on clinical evaluation and written questionnaires without any objective diagnostic tool. The lack of specific biomarkers is a tragic aspect for FM and chronic pain diseases in general. Interestingly, the endogenous opioid system is close to the immune one because of the expression of opioid receptors on lymphocytes membrane. Here we analyzed the role of the Mu opioid receptor on B lymphocytes as a specific biomarker for FM and osteoarthritis (OA) patients. We enrolled three groups of females: FM patients, OA patients (chronic pain control group) and healthy subjects (pain-free negative control group). We collected blood samples to apply immunophenotyping analysis. Written tests were administrated for psychological analysis. Data were statistically analyzed. Final results showed that the percentage of Mu-positive B cells were statistically lower in FM and OA patients than in pain-free subjects. A low expression of Mu-positive B cell was not associated with the psychological characteristics investigated. In conclusion, here we propose the percentage of Mu-positive B cells as a biological marker for an objective diagnosis of chronic pain suffering patients, also contributing to the legitimacy of FM as a truly painful disease.

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“…52,53 Thus, in addition to manage inexplicable symptoms, the patients also have to manage the low legitimacy of the diagnosis of FM in various social contexts. 16 A diagnosis is expected to be followed by efficient therapy leading to cure or at least palliation of symptoms. However, the strenuous time of searching for a diagnosis is now replaced by a period of trials and errors to find something that can help.…”

Section: Personal Suffering That Intrudes and Disturbs Social Lifementioning

confidence: 99%

“…9 However, we often hear physiotherapists tell that their patients' do not comply well with such programs, and on the other hand patients may tell us that physiotherapists do not quite understand how it is like for them to live with FM. During the work of a meta-ethnography on diagnostic experiences of patients with FM including 28 scientific reports, 16 a broad systematic search on qualitative studies was carried out in Medline (n=562), PsychInfo (n=430), Cinahl (n=290), AMED (n=95), and Social Science Citation Index (n=486) up to May 2016. The search terms are given in table 1.…”

mentioning

confidence: 99%

Rethinking physiotherapy for patients with fibromyalgia - lessons learnt from qualitative studies

Mengshoel

Grape

2017

Physical Therapy Reviews

Self Cite

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Background: Fibromyalgia (FM) is characterized by chronic, widespread musculoskeletal pain, extensive fatigue and an array of other symptoms. Cure is not expected, and patients have to learn to live with the illness. During the last years several studies have examined how it is like to live with FM from a patient's point of view. These findings may help physiotherapists to better understand the challenges faced by patients. Objective: To describe what it is like for patients to live with FM and discuss how this may inform physiotherapy practice. Design: A systematic literature search of qualitative studies up till May 2016 was conducted, and 93 papers were read. The focus was on patients' experiences of symptoms and how they managed everyday life. Results: Incomprehensible, unpredictable symptoms of FM intrude and disturb everyday life. The body is constantly monitored by patients on a day-today basis according to fluctuations in pain and energy levels, and habits and routines of daily life are adapted to these shifts. With other words, the connection between body, self and daily life is ruptured. In contrast, those having recovered from FM had found out what they could tolerate during a day and spent long time in rebuiding a life worth living. Conclusion: The present paper presents an argument that living with FM calls for a rather complex personal healing process that should be recognized and supported by physiotherapists.

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Diagnostic experience of patients with fibromyalgia – A meta-ethnography

Cited by 47 publications

References 60 publications

A meta-ethnography to understand the experience of living with urinary incontinence: ‘is it just part and parcel of life?’

A meta-ethnography to understand the experience of living with urinary incontinence: ‘is it just part and parcel of life?’

Identification of MOR-Positive B Cell as Possible Innovative Biomarker (Mu Lympho-Marker) for Chronic Pain Diagnosis in Patients with Fibromyalgia and Osteoarthritis Diseases

Rethinking physiotherapy for patients with fibromyalgia - lessons learnt from qualitative studies

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