Diagnostic criteria and core outcome set development for necrotising otitis externa: the COSNOE Delphi consensus study.

OBJECTIVE: Evidence for necrotising otitis externa (NOE) diagnosis and management is limited, and outcome reporting is heterogeneous. International best practice guidelines were used to develop consensus diagnostic criteria and a core outcome set (COS). METHODS: The study was pre-registered on the Core Outcome Measures in Effectiveness Trials (COMET) database. Systematic literature review identified candidate items. Patient-centred items were identified via a qualitative study. Items and their definitions were refined by multidisciplinary stakeholders in a two-round Delphi exercise and subsequent consensus meeting. RESULTS: The final COS incorporates 36 items within 12 themes: Signs and symptoms; Pain; Advanced Disease Indicators; Complications; Survival; Antibiotic regimes and side effects; Patient comorbidities; Non-antibiotic treatments; Patient compliance; Duration and cessation of treatment; Relapse and readmission; Multidisciplinary team management.Consensus diagnostic criteria include 12 items within 6 themes: Signs and symptoms (oedema, otorrhoea, granulation); Pain (otalgia, nocturnal otalgia); Investigations (microbiology [does not have to be positive], histology [malignancy excluded], positive CT and MRI); Persistent symptoms despite local and/or systemic treatment for at least two weeks; At least one risk factor for impaired immune response; Indicators of advanced disease (not obligatory but mut be reported when present at diagnosis). Stakeholders were unanimous that there is no role for secondary, graded, or optional diagnostic items. The consensus meeting identified themes for future research. CONCLUSION: The adoption of consensus-defined diagnostic criteria and COS facilitates standardised research reporting and robust data synthesis. Inclusion of patient and professional perspectives ensures best practice stakeholder engagement.

"Comforting, Reassuring, and Hot": A Qualitative Exploration of Engaging in Bondage, Discipline, Domination, Submission, Sadism and (Sado)masochism and Kink from the Perspective of Autistic Adults.

Background: There is a lack of research on autistic intimacy; however, a small body of research suggests that bondage, discipline, domination, submission, sadism and (sado)masochism (BDSM)/kink may be appealing to autistic people. We aimed at exploring how engagement in BDSM/kink related to autistic identity, using a phenomenological approach. Methods: We recruited six autistic adults through purposive sampling on social media. All participants took part in a one-to-one spoken interview about their engagement in BDSM/kink and how it related to their sense of identity. Results: We used interpretative phenomenological analysis to analyze the data and found three key themes. Theme 1, "Practicing safe 'sex'" highlighted how the clear communication and explicit focus on consent present in BDSM/kink facilitated a feeling of safety. Theme 2, "So many ways to touch and be touched" was focused on the sensory draw of BDSM/kink, and how it provided exciting ways to explore sensory joy (and sometimes revulsion). Theme 3, "Subverting (neuro)normativity" showed how autistic people can find pleasure in intimate practices that transgress normative expectations. Conclusion: Our findings highlighted the importance of exploring the perceptions of autistic adults in relation to their own intimate practices. Autistic intimacy is an emerging area of research, with very little focus on lived experience. Although engagement in BDSM/kink may appear niche, our findings suggest that there are aspects which are inherently appealing to autistic people. These findings can be used to destigmatize both autistic intimacy and engagement in alternative intimate practices more broadly.

Why is this an important issue?: Autistic intimacy is an under-explored area, with very little focus on the lived experiences of autistic adults and their preferences. Bondage, discipline, domination, submission, sadism and (sado)masochism (BDSM) and kink are alternative intimate practices. There are aspects of BDSM/kink that may appeal to autistic people (e.g., sensory experiences such being restrained during intimacy). However, to date, there is very little research to explore this. What was the purpose of this study?: This study aimed at exploring the experiences and motivations of autistic people who engage in BDSM/kink from their own perspectives. What did the researchers do?: We conducted online video interviews with six autistic adults. We purposefully recruited a small number of people, choosing to use a method called "interpretative phenomenological analysis" that emphasizes deep explorations of the experiences of a small number of people. This method is particularly suitable for areas where very little research exists. What were the results of the study?: We found three key themes: Theme 1, "Practicing safe 'sex'" highlighted how the clear communication and explicit focus on consent present in BDSM/kink facilitated a feeling of safety for our participants, who found uncertainty during intimacy stressful. The sense of safety fostered within these interactions also provided the participants with a space to be their authentic selves, and "switch off" from the outside world. Theme 2, "So many ways to touch and be touched" was focused on the sensory lure of BDSM/kink, and how it provided exciting ways to explore sensory joy (and sometimes revulsion) for autistic people. Theme 3, "Subverting (neuro)normativity" showed how autistic people can find pleasure in intimate practices that other people might find unusual. What do these findings add to what was already known?: To our knowledge, this is the first study to explore autistic engagement in BDSM/kink from a first-person perspective. Our findings show that some alternative ways of being intimate might attract autistic people, because they provide stability, pathways for sensory exploration, or because they are fun in ways that other people sometimes find unexpected. What are potential weaknesses in the study?: We only interviewed a small number of people, and most of them shared similar interests within BDSM/kink. In future, it would be good to find out about the interests of a larger number of autistic people. How will these findings help autistic adults now or in the future?: There is very little research exploring autistic intimacy from a validating perspective. Our findings will help to destigmatize autistic intimacy and normalize conversations about things that people might think of as "taboo.".

Diagnosis as a new beginning not an end: A participatory photovoice study on navigating an autism diagnosis in adulthood.

LAY ABSTRACT: Lots of people seek an autism diagnosis as an adult, and they often say that being diagnosed can be positively life-changing, but the experience of getting a diagnosis can be difficult. We often do not hear the views of people currently looking for a diagnosis, or talk to them about how diagnosis relates to their identity. In our study, we looked at experiences of people currently seeking an autism diagnosis in the UK. We used participatory methods, where six people seeking diagnosis were included as collaborators in the research. They took part in four different sessions, where they helped to shape the research, took part in interviews about their experiences and helped to analyse the patterns in all the interviews. We also used something called photovoice during the interviews, where they could use photos to show how they felt about navigating a diagnosis. We identified four common themes: (1) everyone had experienced some form of crisis before seeking diagnosis; (2) when they realised they were autistic, they felt seen; (3) the diagnostic process and criteria were not working, and they felt judged by clinicians and (4) there was limited support available after diagnosis. In another session, we identified actions that need to be taken which have implications for policy and practice, including improving the diagnostic process and criteria with autistic people, autistic people being listened to more by people like general practitioners and clinicians and diagnosis services needing to be more flexible and appreciate different aspects of someone's identity and neurodivergence.

What can neurodiversity tell us about inner speech, and vice versa? A theoretical perspective.

Inner speech refers to the experience of talking to oneself in one's head. While notoriously challenging to investigate, it has also been central to a range of questions concerning mind, brain, and behaviour. Posited as a key component in executive function and self-regulation, inner speech has been claimed to be crucial in higher cognitive operations, self-knowledge and self-awareness. Such arguments have traditionally been supported with examples of atypical development. But variations in inner speech - and in some cases, significant diversity - in fact pose several key challenges to such claims, and raises many more questions for, language, thought and mental health more generally. In this review, we will summarise evidence on the experience and operation of inner speech in child and adult neurotypical populations, autistic people and other neurodivergent groups, and people with diverse experiences of linguistic and sensory development, including deafness. We will demonstrate that the relationship between inner speech and cognitive operations may be more complex than first assumed when explored through the lens of cognitive and neurological diversity, and the implications of that for understanding the developing brain in all populations. We discuss why and how the experience of inner speech in neurodivergent groups has often been assumed rather than investigated, making it an important opportunity for researchers to develop innovative future work that integrates participatory insights with cognitive methodology. Finally, we will outline why variations in inner speech - in neurotypical and neurodivergent populations alike - nevertheless have a range of important implications for mental health vulnerability and unmet need. In this sense, the example of inner speech offers us both a way of looking back at the logic of developmental psychology and neuropsychology, and a clue to its future in a neurodiverse world.

"Did I get into the twilight zone somehow?": sexual and gender minority cancer caregiver experiences during COVID.

INTRODUCTION: The COVID-19 pandemic created new challenges for cancer patients and caregivers. Little is known about the confluence of the pandemic and people with multiple marginalized identities, such as those in the Sexual and Gender Minority (SGM) community. METHODS: We conducted a mixed-methods pilot study using semi-structured interviews to elicit experiences of cancer among a diverse population of SGM patients and caregivers and a matched set of cisgender heterosexual (cishet) individuals. Here, we present qualitative findings focused on caregiver experiences as ascertained from the broader study. RESULTS: We discovered differences between SGM and cishet caregiving experiences, with SGM caregivers reporting less comfort in the cancer center environment; dissatisfaction with patient-provider communication; feeling excluded from their loved ones' care; and increased social isolation resulting from the caregiver experience. SGM and cishet caregivers described the detrimental impact of the pandemic. CONCLUSION: Our data suggest SGM caregivers experience additional burdens to cancer caregiving when compared to cishet peers. Although SGM and cishet caregivers reported challenges stemming from the COVID-19 pandemic, challenges appeared greater and more acute for SGM caregivers. Pandemic-related findings point to overall gaps in SGM cancer caregiver supports that may be remedied by additional research and targeted intervention development.

Being, Knowing, and Doing: Importing Theoretical Toolboxes for Autism Studies.

The aim of this article was to think with and elaborate on theories developed outside of autism research and the autistic community, and through this support the production of new autistic-led theories: theories and concepts based on autistic people's own embodied experiences and the social worlds we inhabit. The article consists of three different sections all of part of the overall umbrella, Being, knowing, and doing: Importing theoretical toolboxes for autism studies. In each section, we import useful concepts from elsewhere and tailor them to autism studies. Throughout, we mingle our own autoethnographic accounts and shared discourse in relation to research accounts and theories. Illustrating being, we explore and discuss the possibilities of critical realism in autism studies. Illustrating knowing, we explore and discuss the possibilities of standpoint theory in autism studies. Finally, illustrating doing, we explore and discuss the possibilities of neurocosmopolitics including epistemic (in)justice in autism studies. Our proposal here is for an epistemic shift toward neurodiverse collaboration. We are inviting nonautistic people to work with, not on, us, aiming at to make autism research more ethical, breaking down bureaucratic structures, and questioning poor theory and shoddy methodology. Acknowledging intersecting axes of oppression in which an individual seeks to renegotiate and reimagine what it means to belong also means to understand what needs changing in society, as it is and how we might do things differently.

Why is this topic important: People are starting to realize that good autism research should include autistic people (as researchers, participants, co-designers, for example), which means working in neurodiverse teams (teams that include autistic and non-autistic people). So far, a lot of ideas that researchers have had about autistic people have said that they (we) are impaired, which is hurtful and can make it hard to work together. If we are going to create better research, and better spaces to do research in, we need to find new ideas and ways to work. It is important that these new ideas are based on how autistic people see themselves and the world around them (us). What is the purpose of this article?: In this article, we (a group of neurodivergent researchers) look at how we can apply ideas about how knowledge is made, how we use knowledge, and how knowledge impacts people, to creating better autism research. We use ideas from philosophy and think about how they can help us to share our experiences with each other. What do the authors suggest?: We start by exploring how a theory called 'critical realism' can be used to understand differing autistic experiences, by taking into account how our identities and experiences are shaped by different social environments and affect we think about the world. Next we apply standpoint theory, which looks at the importance of acknowledging the impact of a researchers own identity in research. Finally, we explore 'neurocosmopolitanism', which hopes for a future where our differences can be celebrated and accepted. We also think about 'epistemic injustice', where research that is done 'on' instead of 'with' leads to inaccurate or harmful knowledge about us. We argue that by applying ideas such as these to autism studies, we can create spaces where fair and just autism research is created. We argue that these ideas will help both autistic and non-autistic researchers to understand each other better, because they are based on what it is like to be autistic, and not what being autistic looks like to non-autistic people. What do the authors think should happen in the future?: The authors think that more researchers should think about what they say about autistic people. Autistic people should be recognized as the people with the most knowledge about what it is like to be autistic. We think that this will create a kinder way of working for both autistic and non-autistic people and research will be more useful and ethical. How will this study help autistic people now and in future?: This research will help autistic people in two ways. First, it will make sure that autistic people's ideas and experiences will be taken more seriously by non-autistic colleagues. Second, it will lead to better autism research, benefitting autistic people who are not just researchers. This is because the ideas will be more closely related to the experiences of autistic people, instead of outside interpretations of what it is like to be autistic.

From Puzzle to Progress: How Engaging With Neurodiversity Can Improve Cognitive Science.

In cognitive science, there is a tacit norm that phenomena such as cultural variation or synaesthesia are worthy examples of cognitive diversity that contribute to a better understanding of cognition, but that other forms of cognitive diversity (e.g., autism, attention deficit hyperactivity disorder/ADHD, and dyslexia) are primarily interesting only as examples of deficit, dysfunction, or impairment. This status quo is dehumanizing and holds back much-needed research. In contrast, the neurodiversity paradigm argues that such experiences are not necessarily deficits but rather are natural reflections of biodiversity. Here, we propose that neurodiversity is an important topic for future research in cognitive science. We discuss why cognitive science has thus far failed to engage with neurodiversity, why this gap presents both ethical and scientific challenges for the field, and, crucially, why cognitive science will produce better theories of human cognition if the field engages with neurodiversity in the same way that it values other forms of cognitive diversity. Doing so will not only empower marginalized researchers but will also present an opportunity for cognitive science to benefit from the unique contributions of neurodivergent researchers and communities.

'I felt like I deserved it because I was autistic': Understanding the impact of interpersonal victimisation in the lives of autistic people.

LAY ABSTRACT: Research suggests that autistic people are more likely to be hurt by someone they know (e.g. a friend or a family member) compared to non-autistic people. In this study, we wanted to know how being hurt by someone you know affects autistic people, and what might help them recover. In total, 102 autistic people took part in an interview, where we asked questions like how being hurt by people they know had made them feel and whether anyone they had asked for help had done a good job of supporting them. We analysed what they had said using thematic analysis, which involved reading what everyone said and looking for common themes. Our findings showed that a lot of autistic people think it is normal to be hurt by people you know because it has happened to them so much. This makes many autistic people feel like they need to mask parts of themselves to stay safe, but this also makes them really exhausted. It took some people a long time to realise what had happened to them was wrong, and it was hard to ask for help. People who did ask for help often had bad experiences with professionals (e.g. police) who did not know much about autistic people. They said better support would come from creating more autistic-run support groups and educating people about autism. These findings are important for working out how to help people who have been hurt by people they know.

Cutting our own keys: New possibilities of neurodivergent storying in research.

LAY ABSTRACT: A lot of people who do research are also neurodivergent (such as being autistic or attention deficit hyperactivity disorder), but neurodivergent people do not always feel welcome in research spaces which are often shaped around neurotypical people. Some neurotypical researchers lack confidence in talking to neurodivergent people, and others feel like neurodivergent people might not be able to do good research about other people who are like them without being biased. We think it is important that all researchers are able to work well together, regardless of whether they are neurotypical, autistic, or attention deficit hyperactivity disorder (or any other neurotype) - in truly 'neurodiverse' teams. In this article we talk about how to create better spaces for all researchers, where we feel valued for who we are and take each others' needs into account. We do this using some approaches from other areas of research and talking about how they relate to our personal experiences of being neurodivergent researchers with our own personal stories. This article adds to a growing work on how we can work with people who are different from us, in more respectful and kind ways.

Basal ganglia engagement during REM sleep movements in Parkinson's disease.

To elucidate the role of the basal ganglia during REM sleep movements in Parkinson's disease (PD) we recorded pallidal neural activity from four PD patients. Unlike desynchronization commonly observed during wakeful movements, beta oscillations (13-35 Hz) synchronized during REM sleep movements; furthermore, high-frequency oscillations (150-350 Hz) synchronized during movement irrespective of sleep-wake states. Our results demonstrate differential engagement of the basal ganglia during REM sleep and awake movements.

A Nationwide Cross-Sectional Survey of Anesthesiology Fellowship Program Directors: Attitudes on Parental Leave in Residency and Fellowship Training.

Introduction: Little is known about the impact of parental leave on anesthesiology fellowship directors' perception of their fellows. In addition, use of parental leave during residency can result in "off-cycle" residents applying for a fellowship. This study sought to clarify fellowship directors' attitudes and beliefs on effects of parental leave on fellows and off-cycle fellowship applicants. Methods: An online survey was sent to anesthesiology fellowship program directors through e-mail addresses obtained from websites of the Accreditation Council for Graduate Medical Education and specialty societies. Descriptive statistical analysis was used. Results: In total, 101 fellowship directors (31% response rate) completed the survey. Forty-one (41%) directors had a fellow who took maternity leave in the past 3 years. Among the programs, 49 (49%) have a written policy about maternity leave and 36 (36%) have a written paternity or partner leave policy. Overall, most fellowship directors believed that becoming a parent had no impact on fellow performance and professionalism; more respondents perceived a greater negative impact on scholarly activities, standardized test scores, and procedural volume for female trainees than male trainees. Some fellowship directors (10/94; 11%) reported they do not allow off-cycle residents in their program. Among programs that allow off-cycle residents, more directors perceived it a disadvantage rather than an advantage. Conclusions: Fellowship directors perceive that anesthesiology residents who finish training outside the typical graduation cycle are at a disadvantage for fellowship training.

Benchmarking Surgeons' Gender and Year of Medical School Graduation Associated With Monthly Operative Workdays for Multispecialty Groups.

Background Female surgeons reportedly receive less surgical block time and fewer procedural referrals than male surgeons. In this study, we compared operative days between female and male surgeons throughout Florida. Our objective was to facilitate benchmarking by multispecialty groups, both the endpoint to use for statistically reliable results and expected differences. Methodology The historical cohort study included all 4,060,070 ambulatory procedural encounters and inpatient elective surgical states performed between January 2017 and December 2019 by 8,472 surgeons at 609 facilities. Surgeons' gender, year of medical school graduation, and surgical specialty were obtained from their National Provider Identifiers. Results Female surgeons operated an average of 1.0 fewer days per month than matched male surgeons (99% confidence interval 0.8 to 1.2 fewer days, P < 0.0001). The mean differences were 0.8 to 1.4 fewer days per month among each of the five quintiles of years of graduation from medical school (all P ≤ 0.0050). Results were comparable when repeated using the number of monthly cases the surgeons performed. Conclusions An average difference of ≤1.4 days per month is a conservative estimate for the current status quo of the workload difference in Florida. Suppose that a group's female surgeons average more than two fewer operative days per month than the group's male surgeons of the same specialty. Such a large average difference would call for investigation of what might reflect systematic bias. While such a difference may reflect good flexibility of the organization, it may show a lack of responsiveness (e.g., fewer referrals of procedural patients to female surgeons or bias when apportioning allocated operating room time).

American Society of Regional Anesthesia and Pain Medicine contrast shortage position statement.

The medical field has been experiencing numerous drug shortages in recent years. The most recent shortage to impact the field of interventional pain medicine is that of iodinated contrast medium. Pain physicians must adapt to these changes while maintaining quality of care. This position statement offers guidance on adapting to the shortage.

'I can actually do it without any help or someone watching over me all the time and giving me constant instruction': Autistic adolescent boys' perspectives on engagement in online video gaming.

Research into autistic adolescents' engagement in online gaming has so far focused on time spent gaming, or characterizing problematic gaming behaviour and has relied mostly on caregiver report. In the current study, we interviewed 12 autistic adolescent boys, asking about their perspectives on their engagement in online gaming, and their motivations. We analysed the interview data using thematic analysis and identified three key themes in the data, which focused on agency and a sense of belonging, emotion regulation, and acknowledgement of the differing perceptions that the young people and their caregivers had of gaming. Our findings show the need to include the viewpoints of autistic young people in research about their interests and well-being, and provide insights that can help caregivers and professionals to support autistic young people in flourishing.

Peripheral Nerve Injections.

Ultrasound techniques and peripheral nerve stimulation have increased the interest in peripheral nerve injections for chronic pain. The knowledge of anatomy and nerve distribution patterns is paramount for optimal use of peripheral nerve blocks in the management of chronic pain conditions. They are an important tool in an interventional pain physician's armamentarium and can be integrated into pain practices effectively to offer patients pain relief.

"This Was Just How This Friendship Worked": Experiences of Interpersonal Victimization Among Autistic Adults.

Background: The victimization of autistic people by familiar others (interpersonal victimization) is an understudied phenomenon despite suggestions that prevalence rates may be disproportionately high. We know very little about the way autistic people perceive these experiences, and how to support them. The aim of the current study was to explore experiences of interpersonal victimization among autistic adults from their own perspective. Methods: We recruited 43 autistic adults to take part in a qualitative online study, and asked about their experiences of being victimized or taken advantage of by people they know in the past. We analyzed their comments at the semantic level using inductive thematic analysis, from a critical realist perspective. Results: We identified two key themes in the data. The first theme, "cycles of victimization" highlighted the occurrence of polyvictimization in the sample. The second ("perceptions of victimization") focused on how these experiences were related to difficulties with trust (of both self and others), the recognition of victimization, and heightened compliance. The participants expressed difficulty with saying no to people, and found it difficult to identify when someone had negative or manipulative intentions. Conclusions: Our findings suggest that autistic adults experience victimization from a range of close others, and may find it difficult to recognize when someone is acting in an abusive manner. Many participants had experienced heightened compliance in response to unreasonable requests from others, however, reasons for this were varied (e.g., fear and desire to avoid confrontation) and require further investigation. These findings have implications for developing supports that enable autistic adults to recognize their own boundaries and advocate for themselves, in addition to helping them to recognize what a healthy relationship looks like.

Why was this study done?: We think that many autistic people experience being hurt by people they know. This can include both physical harm such as hitting, and emotional harm such as being called horrible things. We currently know very little about these experiences, even though we think it happens a lot. What was the purpose of this study?: The purpose of this study was to find out more about the experiences of autistic people who have been hurt by someone they know, from their own point of view. What did the researchers do?: Using an online survey, we invited autistic adults who had been hurt by someone they know to write about what had happened to them from their own point of view. Forty-three autistic people wrote about their experiences and we analyzed these data by reading what they had said and looking for patterns (themes) across people. What were the results of this study?: Many of the participants told us that they had been hurt more than once, by different people (e.g., their parents, and people they thought were friends). Some participants said that they found it difficult to tell whether someone is treating them badly, and to trust their own judgment about other people's behavior. Some people said that they felt like they had do what other people told them to do. Some did this to avoid getting other people into trouble, whereas others did it because they were scared of what would happen if they said no. What do these findings add to what was already known?: Previous studies have shown that lots of autistic people have been hurt by people they know, and that this has a negative impact on their mental health. Researchers have also asked autistic people what might put them at risk of being hurt by people they know, and how to prevent it. To our knowledge, this is the first study to directly ask autistic people about their own experiences of being hurt by people they know, and highlights what they feel is important for us to know about it. What are potential weaknesses in this study?: We do not know very much about the people who took part aside from their age and gender (e.g., what their race or ethnicity is), and we do not know much about the people who victimized them (e.g., whether they were neurotypical or autistic themselves), or exactly when it happened. How will these findings help autistic people now or in the future?: The findings from this study could be used to think about how we can support autistic people in saying no if someone tells them to do something they do not want to do. They can also be used to find ways to help people to recognize when other people are being hurtful. Finally, we hope that reading this study will make other researchers and practitioners interested in learning how to support autistic people who have been hurt by people they know.