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Decision making is perhaps one of the most difficult aspects of medicine. In an ideal world, individual doctors are able to provide individual patients with the best possible advice tailored to the decisions they face. I believe that many patients, such as myself, imagine that doctors have some special book they consult to decide what the clinically best decision is in all situations. Or that if things go awry, they have a \"break glass in case of emergency\" cure that is within reach. The philosopher and sociologist Michel Foucault argued that in many senses, medicine is today what the church was in previous times: an institution capable of saving people from damnation (death). The truth is that medical decisions are almost never straightforward.Policies are often seen as important tools to aid in clinical decision making. In many respects, policies establish the terrain on which decisions are built. They provide a layout of what can and cannot be done in certain situations and contexts. In a theoretical context, policies reflect a consensus among people facing a similar state of affairs. In a seminal paper on the formulation of medical policies, David Eddy presents a taxonomy of policies, breaking them down into three major categories: standards, guidelines, and options. In Eddy's estimation, if 95-99 percent of patients agree on the desirability of an outcome for a certain procedure or intervention, then that procedure or intervention should become a standard. If 60-95 percent of patients agree on the desirability of an outcome for a certain procedure or intervention, then that procedure or intervention should become a guideline. Procedures or interventions that do not reach the 60 percent threshold should be considered \"optional,\" as patients' preferences vary widely enough that policies become inappropriate in helping standardize or guide clinical practice.To some extent, Eddy's taxonomy of policies aptly describes the presumed goal of professional societies and organizations that create present-day medical policy: to establish standards and guidelines that would be accepted by and benefit a majority of patients. However, much work is still needed on this front. Although our era of medicine is one in which clinical practice is well informed by science, the perspective of the patient is often lacking in the development of guidelines and standards. In 2011 the Institute of Medicine recommended that guideline developers include the viewpoints of patients and the public when forming guidelines. Yet a 2017 review of guideline methodologies conducted by Melissa Armstrong and Joshua Bloom found that of 101 guideline-producing organizations, only 8 percent included patient and public involvement. Nevertheless, these guidelines and standards have provided a road map for how clinicians should navigate situations.

Femtech refers to a growing range of technologies that aim to address health needs typically associated with women’s bodies, such as maternal health, fertility, menstruation, sexual wellness, or contraception. We examine a specific popular femtech product, cycle tracking apps, as an instrument of self-surveillance for greater productivity. Our analysis is grounded in the phenomenology of temporality—we understand workplace surveillance technologies as advancing an internalized sense of time discipline, generating a personal experience of time as a constant call to improve one’s workplace productivity. We then examine how the same dynamic reveals itself in the vocabulary and functionality of popular cycle-tracking apps. Our paper contributes to the existing feminist critiques of femtech, namely, the examination of cycle-tracking apps as promoting a false sense of empowerment and separating users from self-knowledge of their bodies. We argue that cycle-tracking apps perpetuate the attitude that menstruators need to manage their cycle for the sake of reliable participation in productivity demands, creating a disconnect between their internal experience of the temporality of menstruation and external pressures.

Patients with hypermobile Ehlers-Danlos Syndrome (hEDS) often make use of complementary and alternative medical (CAM) techniques to manage their chronic pain and other symptoms. Nevertheless, how they use CAM, which techniques they favor, and how CAM use affects their allopathic care remain unclear. The purpose of this qualitative study was to understand patients' personal experiences with CAM and its role in their symptom management. Thirty individuals living with hEDS completed a brief online survey related to their CAM use. Thereafter, in-depth interviews were conducted with 24 of the survey respondents, qualitatively investigating their experiences with CAM. Data were analyzed using thematic analysis. Participants described massage therapy ( = 21), medical cannabis ( = 12), and mindfulness ( = 13) as some of the most useful CAM modalities for managing symptoms related to hEDS, but they expressed a general interest in pursuing any treatment that could potentially reduce their chronic pain. They suggested an overall trust in CAM modalities and practitioners and ascribed greater empathy to CAM practitioners than to conventional medical providers. However, they also described a critical skepticism of CAM (and conventional) therapies and recounted instances of injury from such treatments. Participants made extensive use of CAM therapies. They described both critical benefits as well as harms from the use of these non-conventional modalities. These results underscore the importance of clinicians maintaining communicative and compassionate relationships with their patients, and of an openness to the discussion and use of CAM treatments.

The Trendelenburg test is widely used to assess hip abductor function, but interpretation is typically subjective and only moderately reliable. Compensatory trunk lean can mask subtle pelvic drop, further limiting diagnostic accuracy. Artificial intelligence (AI) based markerless motion analysis allows objective quantification of pelvic, trunk, and knee angles using standard video recordings. This single-centre cross-sectional feasibility study was conducted in an Irish orthopaedic unit. Twelve adults were enrolled: seven post–total hip arthroplasty (THA) and five with native hip pathology. Each patient performed a standardised single-leg Trendelenburg test on both legs while being recorded with a single posteriorly placed smartphone camera. Videos were analysed offline using an AI-based markerless motion application (OnForm) to derive coronal-plane pelvic obliquity, trunk lean, and knee angle change between bipedal and single-leg stance. Continuous outcomes were summarised as medians with interquartile ranges (IQR) and ranges. Pre-specified thresholds (pelvic drop ≥ 4°, trunk lean ≥ 5°, knee angle change ≥ 3°) were used to describe the frequency of marked deviations. All patients completed the protocol with analysable recordings. The median video capture time was 32.5 s (IQR 23.5–36.0; range 19–42) and the median analysis time was 184.5 s (IQR 178.5–196.5; range 168–207), giving a median total workflow time of 215.5 s (IQR 203.5–232.5; range 193–244) per patient. Median worst contralateral pelvic obliquity was 0.0° (IQR − 1.0° to + 1.5°; range − 5° to + 6°). Median maximum trunk lean was 4.5° (IQR 2.8°–9.0°; range 2°–10°). Median coronal-plane knee angle change was 3.0° (IQR 2.0°–4.0°; range 1°–8°). Post-THA patients showed greater trunk compensation than those with native hips (median maximal trunk lean 9.0° vs 3.0°; median difference 6.0°), with trunk lean ≥ 5° in 5/7 post-THA and 1/5 native-hip patients. Knee deviations ≥ 3° were seen in 8 patients (67%). AI-assisted single-camera analysis of the Trendelenburg test is feasible, rapid, and clinically informative. The method consistently quantified pelvic, trunk, and knee angles and demonstrated that post-THA patients frequently compensate with trunk lean rather than contralateral pelvic drop. This approach could enhance objective documentation of Trendelenburg performance and support postoperative rehabilitation monitoring. These findings are preliminary and hypothesis-generating; larger controlled studies with asymptomatic controls and reference standards are required to validate accuracy and clinical utility.

Background The Ehlers-Danlos Syndromes (EDS) are a group of connective tissue disorders that are hereditary in nature and characterized by joint hypermobility and tissue fragility. The complex nature of this unique patient population requires multidisciplinary care, but appropriate centers for such care do not exist in large portions of the country. Need for more integrated services has been identified in Chicagoland, or Chicago and its suburbs. In order to explore and begin to address barriers to seeking appropriate care facing EDS patients in this region, we developed an online survey which we circulated through EDS social media groups for Chicagoland patients. Results Three hundred and nine unique respondents participated. We found that there exists a strong medical need for and interest in the development of a center in the region, and participants reported that, if made available to them, they would make extensive and regular use of such a facility. Conclusions We conclude that the establishment of a collaborative medical center specializing in the diagnosis and treatment of EDS, Hypermobility Spectrum Disorder, and related disorders in the Chicagoland area would greatly benefit patients by providing comprehensive care, alleviate the burden on overworked healthcare providers, and contribute to the sustainability of medical facilities.

The rarity that is inherent in rare disease (RD) often means that patients and parents of children with RDs feel uniquely isolated and therefore are unprepared or unsupported in their care. To overcome this isolation, many within the RD community turn to the internet, and social media groups in particular, to gather useful information about their RDs. While previous research has shown that social media support groups are helpful for those affected by RDs, it is unclear what these groups are particularly useful or helpful for patients and parents of children with RDs. This study aimed to identify what specific features of disease-related support groups (DRSGs) the RD community finds particularly useful or supportive and provide a set of recommendations to improve social media-based RD support groups based on this information. Semistructured qualitative interviews were performed with patients and parents of patients with RDs. Interview participants had to be at least 18 years of age at the time of the interview, be seen by a genetics specialist at a partner health care institution and be proficient in the English language. Social media use was not a prerequisite for participation, so interview participants ranged from extensive users of social media to those who chose to remain off all social media. All interviews were conducted by phone, recorded, and then transcribed. Interview transcripts were then coded using the 6 steps outlined by Braun and Clarke. Three researchers (TAD, SLV, and CMEH) performed initial coding. After this, the study team conducted a review of themes and all members of the team agreed upon a final analysis and presentation of data. We conducted 31 interviews (mean age 40, SD 10.04 years; n=27, 87% were women; n=30, 97% were non-Hispanic White). Thematic analysis revealed that social media DRSG users identified the informational usefulness of these groups as being related to the gathering and sharing of specific information about an RD, clarification about the importance and meaning of certain symptoms, and obtaining insight into an RD's progression and prognosis. Participants also identified that DRSGs were useful sources of practical information, such as tips and tricks about managing RD-related issues and concerns. In addition, participants found DRSGs to be a useful space for sharing their disease-related stories but also highlighted a feeling of exhaustion from overexposure and overuse of DRSGs. This study identifies the usefulness of DRSGs for the RD community and provides a set of recommendations to improve future instances of DRSGs. These recommendations can be used to create DRSGs that are less prone to splintering into other DRSGs, thus minimizing the risk of having important RD-related information unhelpfully dispersed amongst a multitude of support groups.

ObjectivesTo examine how clinicians’ scepticism regarding patients’ self-reports of subjective symptoms can be internalised, leading to psychosocial and medical harms.DesignIn-depth, semi-structured qualitative interviews with the resulting data analysed using reflexive thematic analysis.Participants43 individuals with Ehlers-Danlos syndrome (EDS) from Europe and North America completed a pre-survey, and 39 of those participants completed interviews for this study. Purposive sampling was used to obtain approximately equal numbers of participants with hypermobile EDS and the molecularly defined types of EDS.ResultsPatients with both hypermobile and molecularly defined types of EDS reported high levels of self-doubt, with 73% of survey respondents questioning the extent—and even reality—of their private experiences of pain. Participants attributed much of their self-doubt to repeated dismissal and minimisation of their symptoms in healthcare settings, especially during childhood. Ultimately, self-doubt transformed not merely how they communicated their symptoms but also how they recognised, evaluated and even experienced them at a phenomenological level. While some participants developed coping strategies, others withdrew from the conventional medical system altogether.ConclusionThese findings have important implications for clinicians, who may inadvertently reinforce self-doubt through discussion of diagnostic uncertainty. Doubt need not be delegitamising. Recognising and mitigating these potential harms requires epistemic humility and attention to the psychosocial dynamics of patient-provider interaction.

Background Patients with uncommon genetic conditions often face limited in‐person resources for social and informational support. Hypermobile Ehlers–Danlos syndrome (hEDS) is a rare or underdiagnosed hereditary disorder of the connective tissue, and like those with similar diseases, patients with hEDS have begun to turn to social media in search of care and community. The aims of our study were to understand the usage habits and perceptions of utility of social media use for patients with hEDS in order to formulate suggestions for how clinicians may best engage these and similar patient populations about this topic. Methods We conducted both a quantitative survey and qualitative interviews with patients who had received a robust clinical diagnosis of hEDS. Results Twenty‐four individuals completed the initial survey, and a subset of 21 of those participants completed an interview. Through thematic analysis, we identified four primary themes related to their experience with social media: (1) befriending others with their disease, (2) seeking and vetting information, (3) the risks and downsides of social media use, and (4) the desire for clinicians to discuss this topic with them. Conclusion We conclude by proposing five suggestions that emerge empirically from our data. These proposals will help clinicians engage their patients regarding social media use in order to promote its potential benefits and circumvent its potential harms as they pursue support for their hereditary condition.

The Ehlers-Danlos Syndromes (EDS) are a group of connective tissue disorders that are hereditary in nature and characterized by joint hypermobility and tissue fragility. The complex nature of this unique patient population requires multidisciplinary care, but appropriate centers for such care do not exist in large portions of the country. Need for more integrated services has been identified in Chicagoland, or Chicago and its suburbs. In order to explore and begin to address barriers to seeking appropriate care facing EDS patients in this region, we developed an online survey which we circulated through EDS social media groups for Chicagoland patients. Three hundred and nine unique respondents participated. We found that there exists a strong medical need for and interest in the development of a center in the region, and participants reported that, if made available to them, they would make extensive and regular use of such a facility. We conclude that the establishment of a collaborative medical center specializing in the diagnosis and treatment of EDS, Hypermobility Spectrum Disorder, and related disorders in the Chicagoland area would greatly benefit patients by providing comprehensive care, alleviate the burden on overworked healthcare providers, and contribute to the sustainability of medical facilities.