Claims in the clinic: A qualitative group interview study on healthcare communication about unestablished side effects of the copper IUD.

BACKGROUND: Lay online communication about health-related issues has in recent years largely been associated with the spread of misinformation and decreased trust in healthcare. Such communication has included claims about systemic side effects of the copper IUD. In Sweden, a social media group centered on this issue now gathers around 8,700 members. This study aimed to use the case of reported yet unestablished side effects of the copper IUD to investigate experiences of and reasoning about healthcare encounters between caregivers and patients contesting established medical knowledge. METHODS: We conducted qualitative, semi-structured, digital group interviews with members of the social media group (seven groups, n = 23) and with midwives and gynecologists (six groups, n = 15). We also gathered essays written by social media group members (n = 23). The material was analyzed thematically. RESULTS: The participant accounts pointed towards tensions related to principles of evidence-based medicine, i.e., perceived insufficiency of research on the safety of the copper IUD and lack of clarity in routines for reporting and following up suspected side effects, and of patient-centered care, i.e., listening respectfully to patients. Tension between caregivers' obligation to adhere to evidence-based medicine while also providing patient-centered care was noted. CONCLUSION: Healthcare providers' efforts to assess and address patient claims contesting established medical knowledge should include ensuring and communicating sufficient research, clarifying procedures for reporting suspected side effects, and improving person-centered care. This can increase the quality of care while contributing to the mitigation of distrust in healthcare and the spreading of health-related misinformation.

The different facets of 'experiential knowledge' in Swedish women's claims about systemic side effects of the copper intrauterine device.

'Experiential knowledge' has been identified as a key epistemic resource used by lay people to contest medical authorities and build new knowledge related to health. The Internet has created unprecedented opportunities for such experience-based epistemic projects. This article contributes to understandings of the as yet under-theorised concept of experiential knowledge by analysing accounts of a group of Swedish women who claim that their use of contraceptive copper IUDs has led to systemic side effects not recognised by health care providers. Based on digital group interviews and written essays, we distinguish between three components or stages of experiential knowledge at work in the women's use of experience as an epistemic resource: somatic knowing, collective validation and self-experimentation. Drawing on a critical realist framework, we defend a notion of experiential knowledge as crucially, while only partially, based on a bodily and practical access to aspects of reality organised by extra-discursive principles. By providing theoretical complexity to the notion of experiential knowledge, we contribute resources for discriminating between and evaluating various experience-based claims, something that is particularly needed in the current 'post-truth' era where experience-based knowledge claims pointing in divergent directions flourish.

On the verge between the scientific and the alternative: Swedish women's claims about systemic side effects of the copper intrauterine device.

The article intervenes in discussions on lay knowledge production about health in the Internet era, through the case of a group of women claiming that their use of copper intrauterine devices has led to systemic side effects. Based on online group interviews and written essays, we examine how women embracing these knowledge claims navigate various sources of information, focusing on the role of scientificity in these epistemic negotiations. The women were found to be involved in an active, scientifically oriented process of knowledge formation, which we refer to as a collective labour of scientific patchworking. Meanwhile, due to a perceived lack of scientifically based expertise on their condition, the women reported having little choice but turn to resources with weaker scientific foothold. We argue that the tendency to portray these women's claims as unscientific simplifies the nature of lay knowledge production, potentially deepening divides between medical authorities and the public.

Attitudes Toward the Copper IUD in Sweden: A Survey Study.

Background: While the efficacy and safety of the contraceptive copper intrauterine device (IUD) have been affirmed, alongside its importance for the prevention of unintended pregnancies, some studies have pointed to negative attitudes toward the device. In recent years, social media communication about it has included claims about systemic side effects, unsubstantiated by medical authorities. Research from the Swedish context is sparse. This study investigates attitudes toward the copper IUD and any correlations between negative attitudes toward or experiences of the device, and (1) sociodemographic characteristics, (2) the evaluation of the reliability of different sources of information, and (3) trust in healthcare and other societal institutions. Methods: A survey was distributed online to adult women in Sweden (n = 2,000). Aside from descriptive statistics, associations between negative attitudes toward or experiences of the copper IUD and sociodemographic and other variables were calculated using logistic regressions and expressed as odds ratios (ORs) with 95% confidence intervals (95% CIs). Open survey responses (n = 650) were analyzed thematically. Results: While many reported positive attitudes toward and experiences of the IUD, 34.7% of all respondents reported negative attitudes and 45.4% of users reported negative experiences. Negative attitudes were strongly correlated with negative experiences. Negative attitudes and experiences were associated with low income, but no conclusive associations were identified with other socioeconomic variables. Negative attitudes and experiences were associated with lower levels of confidence in and satisfaction with healthcare, as well as lower self-assessed access and ability to assess the origin and reliability of information about the IUD. In open responses, negative comments were prevalent and included references to both common and unestablished perceived side-effects. Respondents pointed to problematic aspects of information and knowledge about the copper IUD and called for improved healthcare communication and updated research. Conclusion: Healthcare provider communication about the copper IUD should promote reproductive autonomy and trust by providing clear information about potential side effects and being open to discuss women's experiences and concerns. Further research on copper IUD dissatisfaction and ways in which health professionals do and may best respond to it is needed.

Attitudes Toward HPV Vaccination in Sweden: A Survey Study.

Background: While HPV vaccination uptake in Sweden is quite high, at around 80%, vaccine hesitancy remains an issue in countries throughout Europe. The latter can be related to a contemporary context of increased contestation of expert knowledge and of a large share of information on health-related issues including vaccination today being sought via the internet. Still, there is a paucity of recent research on attitudes toward the HPV vaccine in a larger sample of the population in Sweden. This survey study assesses such attitudes and any correlations between vaccine hesitancy and sociodemographic characteristics, trust in healthcare and other societal institutions, and evaluation of the reliability of different sources of information. Methods: The validated survey questionnaire was distributed to adult women in Sweden (n = 2,000), via a nationally representative web panel. The response rate was 37%. Aside from descriptive statistics, associations between vaccine hesitancy and sociodemographic and other variables were computed using logistic regressions and expressed as odds ratios (ORs) with 95% confidence intervals (95% CIs). Results: Our results show a positive attitude toward HPV vaccination overall. Still, some degree of HPV vaccine hesitancy was indicated by 33.8% of the respondents, and more pronounced hesitancy by 7.6%. Regarding vaccination in general, a very positive attitude was indicated by 55%. HPV vaccine hesitancy was associated with low education and low income and strongly associated with a lack of confidence in healthcare and other societal institutions. It was also correlated with a self-assessed lack of access to, and ability to assess the origin, quality and reliability of, information about the HPV vaccine. Conclusion: Efforts to provide transparent information about HPV vaccination should be combined with healthcare providers being open to discuss vaccine concerns with patients and avoiding practices that do not promote trust.

Chemistry or Service? Sugar Daddies' (Re)quest for Mutuality within the Confines of Commercial Exchange.

With the emergence and global proliferation of "sugar dating" websites, the phenomenon of sugar dating is gaining increased attention. Sugar dating is described by these websites as arrangements based on an exchange of financial or other forms of support for intimacy and companionship. The framing of sugar dating as something in between a business transaction and mutually enjoyable dating serves as the point of departure of this article, which draws on semi-structured interviews and a survey questionnaire with "sugar daddies" engaged in heterosexual sugar dating in Sweden. We examined how the tension between economic instrumentality and the ideal of mutual enjoyment is played out in "sugar daddies'" accounts of their sugar dating experiences. We demonstrate that the participants desire encounters with "sugar babies" to be based on both sexual and relational mutuality, i.e., they want the women to enjoy being with them beyond the economic rewards. We show that the men's use of economic incentives to gain access to "sugar babies" stands in a relationship of tension with their desire for interactions to be based on mutuality. However, through various mechanisms they still manage to reap the fruits of the experience of mutuality offered in sugar dating encounters.

Neutrophils from ANCA-associated vasculitis patients show an increased capacity to activate the complement system via the alternative pathway after ANCA stimulation.

Anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitides (AAV), including granulomatosis with polyangiitis (GPA) and microscopic polyangiitis (MPA), are autoimmune conditions associated with small vessel inflammation. Earlier studies indicate that complement activation via the alternative pathway plays a major role in the pathogenesis. In this study we have investigated if ANCA-activation of neutrophils from AAV patients leads to activation of the alternative complement pathway. C5a-primed neutrophils (PMN) from 10 AAV patients and 10 healthy controls (HC) were stimulated with PMA or IgG purified from PR3-ANCA positive patients (ANCA IgG). The supernatants were analyzed for release of complement proteins and markers of different granules by ELISA, and release of microparticles (MP) by flow cytometry. The ability of the supernatants to activate the alternative complement pathway was determined by incubation with normal serum and C3bBbP and C5a were measured by ELISA. MP were analyzed by flow cytometry and removed by centrifugation. The supernatants from the AAV patients' neutrophils produced significantly more C3bBbP compared with HCs (p = 0.0001). C3bBbP levels correlated with the number of MP. After removal of MP from the supernatants, alternative pathway activation was significantly lower. This study shows that primed and ANCA-stimulated neutrophils from AAV patients have a greater ability to activate the alternative complement pathway compared to primed neutrophils from healthy controls. This finding emphasizes the role of complement in the pathogenesis of AAV - underlining the therapeutic potential of C5a and other complement blockade.

Monocyte Chemoattractant Protein-1 in Antineutrophil Cytoplasmic Autoantibody-Associated Vasculitis: Biomarker Potential and Association with Polymorphisms in the MCP-1 and the CC Chemokine Receptor-2 Gene.

Antineutrophil cytoplasmic autoantibody- (ANCA-) associated vasculitis (AAV) are relapsing-remitting disorders with unpredictable prognosis. There is a need of biomarkers for distinguishing which patients will have a more severe outcome and also for predicting relapses in disease activity. This study confirms the previous results of urinary MCP-1 (uMCP-1) as a prognostic marker and explores its potential as a marker of disease activity. Method. 114 patients with AAV were followed regularly between 2002 and 2011 at Skåne University Hospital. Urine samples, blood samples, and clinical status were registered. The urine samples were analyzed in an in-house-developed ELISA. PCR-RLFP was used to analyze the MCP-1 and CCR2 genes. Results. Patients with severe prognosis had significantly higher levels of uMCP-1 compared to patients with nonsevere prognosis and healthy controls. Patients with renal damage had higher levels compared to patients who did not have renal damage. There was also a tendency of higher uMCP-1 levels in active disease as compared to remission. AA in the -2518 position in the MCP-1 gene was associated with a more severe outcome compared to the A/G or the G/G genotype. The A/A genotype were also associated with higher levels of uMCP-1. No significant associations were seen for the CCR2-V64I. Conclusion. This study confirmed the connection between high uMCP-1 levels and poor prognosis and also disease activity. It also suggests an association of the A/A genotype at position -2518 in the MCP-1 gene and poor prognosis in AAV. uMCP-1 is clearly a candidate biomarker of potential clinical value. The A/A genotype association needs further evaluation.

Decreased neutrophil apoptosis in quiescent ANCA-associated systemic vasculitis.

BACKGROUND: ANCA-Associated Systemic Vasculitis (AASV) is characterized by leukocytoclasis, accumulation of unscavenged apoptotic and necrotic neutrophils in perivascular tissues. Dysregulation of neutrophil cell death may contribute directly to the pathogenesis of AASV. METHODS: Neutrophils from Healthy Blood Donors (HBD), patients with AASV most in complete remission, Polycythemia Vera (PV), Systemic Lupus Erythematosus (SLE), Rheumatoid Arthritis (RA) and renal transplant recipients (TP) were incubated in vitro, and the rate of spontaneous apoptosis was measured by FACS. Plasma levels of cytokines and sFAS were measured with cytometric bead array and ELISA. Expression of pro/anti-apoptotic factors, transcription factors C/EBP-α, C/EBP-ß and PU.1 and inhibitors of survival/JAK2-pathway were measured by real-time-PCR. RESULTS: AASV, PV and RA neutrophils had a significantly lower rate of apoptosis compared to HBD neutrophils (AASV 50 ± 14% vs. HBD 64 ± 11%, p<0.0001). In RA but not in AASV and PV, low apoptosis rate correlated with increased plasma levels of GM-CSF and high mRNA levels of anti-apoptotic factors Bcl-2A1 and Mcl-1. AASV patients had normal levels of G-CSF, GM-CSF and IL-3. Both C/EBP-α, C/EBP-ß were significantly higher in neutrophils from AASV patients than HBD. Levels of sFAS were significantly higher in AASV compared to HBD. CONCLUSION: Neutrophil apoptosis rates in vitro are decreased in AASV, RA and PV but mechanisms seem to differ. Increased mRNA levels of granulopoiesis-associated transcription factors and increased levels of sFAS in plasma were observed in AASV. Additional studies are required to define the mechanisms behind the decreased apoptosis rates, and possible connections with accumulation of dying neutrophils in regions of vascular lesions in AASV patients.

Proteinase 3 and CD177 are expressed on the plasma membrane of the same subset of neutrophils.

Proteinase 3 (PR3) is found in granules of all neutrophils but also on the plasma membrane of a subset of neutrophils (mPR3). CD177, another neutrophil protein, also displays a bimodal surface expression. In this study, we have investigated the coexpression of these two molecules, as well as the effect of cell activation on their surface expression. We can show that CD177 is expressed on the same subset of neutrophils as mPR3. Experiments show that the expression of mPR3 and CD177 on the plasma membrane is increased or decreased in parallel during cell stimulation or spontaneous apoptosis. Furthermore, we observed a rapid internalization and recirculation of mPR3 and plasma membrane CD177, where all mPR3 is replaced within 30 min. Our findings suggest that the PR3 found on the plasma membrane has its origin in the same intracellular storage as CD177, i.e., secondary granules and secretory vesicles and not primary granules. PR3- and CD177-expressing neutrophils constitute a subpopulation of neutrophils with an unknown role in the innate immune system, which may play an important role in diseases such as Wegener's granulomatosis and polycythemia vera.