The lived experience of fibromyalgia in female patients, a phenomenological study

<p>Abstract</p> <p>Background</p> <p>Fibromyalgia is a chronic syndrome with no cure. A thorough understanding of the illness experience is therefore key in the palliative care of patients with this condition. In search for supportive treatments fibromyalgia patients often attend a chiropractor or other manual therapist. Knowledge of the meaning and reality of living with this condition to the patient could be considered essential to any health care practitioner playing a role in the management. This study aimed to gain a better understanding of the subjective experience of fibromyalgia, focusing on the personal, occupational and social impact of the condition on patients' lives. This included exploring the patients' views about the future.</p> <p>Methods</p> <p>This study employed descriptive phenomenology and adopted Husserl's concept of transcendental subjectivity or "bracketing". This qualitative study involved semi-structured interviews and was undertaken to obtain rich data that reflected the essence of the participants' experience. Participants consisted of six female volunteers, diagnosed with fibromyalgia by the University Hospital Gent, Belgium. Data were analysed using a thematic framework.</p> <p>Results</p> <p>Fibromyalgia pervaded all aspects of life. Four main themes arose from data analysis, namely; the impact of fibromyalgia on patients' occupational and personal life, the impact on their future and aspects of social interaction. Nearly all participants had stopped working, giving rise to feelings of uselessness and loss of identity. Leisure activities were also greatly affected. Fibromyalgia was said to alter family bonds, some of which were reinforced, others were broken. The diagnosis was seen as a relief, marking an end to a period of uncertainty. Participants reported ambivalence in interaction. Despite some positive encounters, frustration arising from perceived incomprehension dominated. Consequently patients preferred not to share their experiences.</p> <p>Conclusions</p> <p>The study revealed the negative impact of fibromyalgia on patients' lives as comprising of great complexity and individuality. Several implications for health care practitioners can be extrapolated, including the need of a more efficient diagnostic process and increased education about the fibromyalgia experience. Further studies are required to better clarify the multifaceted nature of living with the condition.</p

Towards core outcome set (COS) development: a follow-up descriptive survey of outcomes in Cochrane reviews

BACKGROUND: A core outcome set (COS) can address problems of outcome heterogeneity and outcome reporting bias in trials and systematic reviews, including Cochrane reviews, helping to reduce waste. One of the aims of the international Core Outcome Measures in Effectiveness Trials (COMET) Initiative is to link the development and use of COS with the outcomes specified and reported in Cochrane reviews, including the outcomes listed in the summary of findings (SoF) tables. As part of this work, an earlier exploratory survey of the outcomes of newly published 2007 and 2011 Cochrane reviews was performed. This survey examined the use of COS, the variety of specified outcomes, and outcome reporting in Cochrane reviews by Cochrane Review Group (CRG). To examine changes over time and to explore outcomes that were repeatedly specified over time in Cochrane reviews by CRG, we conducted a follow-up survey of outcomes in 2013 Cochrane reviews. METHODS: A descriptive survey of outcomes in Cochrane reviews that were first published in 2013. Outcomes specified in the methods sections and reported in the results section of the Cochrane reviews were examined by CRG. We also explored the uptake of SoF tables, the number of outcomes included in these, and the quality of the evidence for the outcomes. RESULTS: Across the 50 CRGs, 375 Cochrane reviews that included at least one study specified a total of 3142 outcomes. Of these outcomes, 32 % (1008) were not reported in the results section of these reviews. For 23 % (233) of these non-reported outcomes, we did not find any reason in the text of the review for this non-report. Fifty-seven percent (216/375) of reviews included a SoF table. CONCLUSIONS: The proportion of specified outcomes that were reported in Cochrane reviews had increased in 2013 (68 %) compared to 2007 (61 %) and 2011 (65 %). Importantly, 2013 Cochrane reviews that did not report specified outcomes were twice as likely to provide an explanation for why the outcome was not reported. There has been an increased uptake of SoF tables in Cochrane reviews. Outcomes that were repeatedly specified in Cochrane reviews by CRG in 2007, 2011, and 2013 may assist COS development. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s13643-015-0060-0) contains supplementary material, which is available to authorized users

A united statement of the global chiropractic research community against the pseudoscientific claim that chiropractic care boosts immunity.

BACKGROUND: In the midst of the coronavirus pandemic, the International Chiropractors Association (ICA) posted reports claiming that chiropractic care can impact the immune system. These claims clash with recommendations from the World Health Organization and World Federation of Chiropractic. We discuss the scientific validity of the claims made in these ICA reports. MAIN BODY: We reviewed the two reports posted by the ICA on their website on March 20 and March 28, 2020. We explored the method used to develop the claim that chiropractic adjustments impact the immune system and discuss the scientific merit of that claim. We provide a response to the ICA reports and explain why this claim lacks scientific credibility and is dangerous to the public. More than 150 researchers from 11 countries reviewed and endorsed our response. CONCLUSION: In their reports, the ICA provided no valid clinical scientific evidence that chiropractic care can impact the immune system. We call on regulatory authorities and professional leaders to take robust political and regulatory action against those claiming that chiropractic adjustments have a clinical impact on the immune system

Pregnancy-related pelvic girdle pain in nulliparous women in Ireland : a longitudinal mixed methods study

THESIS 11125.1THESIS 11125.2Background: Pregnancy-related pelvic girdle pain (PPGP) is a common condition and may persist postpartum, but its prevalence, risk and prognostic factors were not known in an Irish setting. Moreover, the impact of persistent PPGP on women?s lives had not yet been explored. Design: A longitudinal mixed methods study. Aim: To identify the prevalence and factors associated with PPGP antenatally and up to 12 months postpartum in nulliparous women in Ireland, and to explore the experiences and health-seeking behaviours of women with persistent PPGP postpartum. Setting: One large urban maternity hospital in Ireland. (This is one of the three MAMMI study sites.) Sample: A preliminary sample of 1478 women (of the final sample of 2600 women) were recruited in early pregnancy, of whom 23 women also took part in an interview. Methods: Site hospital and university ethical approval were granted. This partially mixed, sequential, equal status design study had an initial quantitative phase (1), followed by a qualitative phase (2). Women aged 18 years or older who were able to read and understand English were recruited to phase 1 of the study, which involved completing a self-administered survey in early pregnancy, and 3, 6, 9 and 12 months postpartum. PPGP was assessed using a pain diagram, and the Pelvic Girdle Questionnaire was included in the final two surveys. The prevalence of PPGP and persistent PPGP were examined at each follow-up point. Risk factors and prognostic factors for PPGP were assessed using multivariable logistic regression. From the sample of phase 1, 23 women who had persistent PPGP for at least three months postpartum took part in an individual semi-structured interview in phase 2 of this study. The interview data were analysed using thematic analysis. Results: Period prevalence of PPGP was 60.1% in early/mid pregnancy and 69.7% in the last month of pregnancy, with posterior PPGP being most common, followed by combined anterior and posterior PPGP, and anterior PPGP. In the first three months postpartum, 68.8% of women had persistent PPGP. This dropped to 51.2%, 3 to 6 months postpartum, 40.5%, 6 to 9 months postpartum, and 33.3%, 9 to 12 months postpartum. Women aged 35 or older were less likely to have PPGP in early/mid pregnancy (OR 0.7, 95% CI 0.5-0.9, p=0.02) and in the last month of pregnancy (OR 0.4, 95% CI 0.2-0.8, p=0.04). Women who were obese or very obese were at greater risk of having PPGP (OR 2.1, 95% CI 1.4-3.3, p=0.001). A history of any lumbopelvic pain in the year before becoming pregnant was also strongly associated with PPGP in early/mid pregnancy (OR 5.6, 95% CI 4.3-7.2, p<0.001) and in the last month pregnancy (OR 2.6, 95% CI 2.0-3.4, p<0.001). Women who were obese or very obese were more likely to have persistent PPGP in the first three months postpartum (OR 2.3, 95% CI 1.2-4.4, p=0.01), 3 to 6 months postpartum (OR 1.9, 95% CI 1.1-3.4, p=0.02), 6 to 9 months postpartum (OR 2.5, 95% 1.4-4.5, p=0.003), and 9 to 12 months postpartum (OR 3.1, 95% CI 1.7-6.0, p<0.001). Women with a history of any lumbopelvic pain before pregnancy were also significantly more likely to have persistent PPGP 0 to 3 months after the birth (OR 2.4, 95% CI 1.7-3.4, p<0.001), and women with any pelvic girdle pain in the year before pregnancy were more likely to have persistent PPGP 3 to 6 months postpartum (OR 2.5, 95% CI 1.7-3.5, p<0.001), 6 to 9 months (OR 3.5, 95% CI 2.4-5.1, p<0.001), and 9 to 12 months postpartum (OR 3.7, 95% CI 2.4-5.8, p<0.001). Compared to women who had anterior PPGP during pregnancy, women with posterior PPGP were more likely to have persistent PPGP 0 to 3 months (OR 2.0, 95% CI 1.0-3.9, p=0.04) and 3 to 6 months postpartum (OR 2.4, 95% CI 1.1-5.1, p=0.02). Women with combined anterior and posterior PPGP during pregnancy were more likely to have persistent PPGP at all four follow-up periods (0-3 months (OR 3.4, 95% CI 1.6-7.3, p=0.001); 3-6 months (OR 4.0, 95% CI 1.8-9.4, p=0.001); 6-9 months (OR 4.2, 95% CI 1.4-12.5, p=0.009); 9-12 months postpartum (OR 4.5, 1.0-21.6, p=0.05)). Women with a history of severe period pain before pregnancy were more likely to have persistent PPGP in the first three months after birth (OR 1.5, 95% CI 1.0-2.1, p=0.04), and not having a university qualification was associated with persistent PPGP 6 to 9 months postpartum (OR 1.6, 95% CI 1.0-2.6, p=0.04). Stress in the first three months postpartum was associated with persistent PPGP 6 to 9 months (OR 2.4, 95% 1.2-4.8, p=0.01) and 9 to 12 months postpartum (OR 3.4, 95% CI 1.6-7.2, p=0.001). On the other hand, women who gave birth by vacuum/kiwi were less likely to have persistent PPGP in the first three months postpartum (OR 0.5, 95% CI 0.3-0.9, p=0.02) and 3 to 6 months postpartum (OR 0.4, 95% CI 0.3-0.8, p=0.004). Women on unpaid maternity leave were also less likely to experience persistent PPGP 9 to 12 months postpartum (OR 0.3, 95% CI 0.09-1.0, p=0.04). In phase 2, six themes emerged about the experiences of women with persistent PPGP. Women ?put up with the pain? but had to balance activities and were grateful for support from family and friends to face everyday challenges. They described different strategies they used to deal with their symptoms, although many were not sure about what to do or who to see. They ?did not feel back to normal? and described feelings of physical limitations, frustration, and a negative impact on their mood. ?They didn\u27t ask, I didn\u27t tell? was another theme, in which they expressed a perceived lack of follow-up postpartum, and feelings of being ignored by healthcare professionals. The theme ?Seeking advice and support? described women\u27s role of talking to others, and triggers and barriers to getting help. Persistent symptoms were ?unexpected? for women due to a lack of information given about PPGP postpartum. Finally, women were uncertain about how their symptoms would progress, and they expressed worry about having another baby in the theme ?What next??. Conclusion: PPGP is a common maternal morbidity affecting more than half of women during pregnancy. Findings call into question the length of postnatal care, since about a third of women with PPGP continued to have persistent symptoms a year after the birth. In Ireland, PPGP is underreported during pregnancy and postpartum. Including questions concerning PPGP in routine antenatal and postnatal care, and adequate information and advice throughout, may identify women at increased risk and address the perceived lack of follow-up. Summary of contribution of the study to knowledge about PPGP: This study contributed to knowledge concerning PPGP in several ways: (1) The systematic review that was undertaken in preparation of this study provides a unique rigorous overview of existing literature on risk and prognostic factors for PPGP; (2) This study is the first to provide national data in Ireland about the prevalence of, and risk and prognostic factors for, PPGP; (3) This study gives an in-depth account of the experiences and health-seeking behaviours of women with persistent PPGP

Methodology in core outcome set (COS) development: the impact of patient interviews and using a 5-point versus a 9-point Delphi rating scale on core outcome selection in a COS development study

10.1186/s12874-020-01197-3BMC MEDICAL RESEARCH METHODOLOGY21