Patient Priorities in Autoimmune Hepatitis: The Need for Better Treatments, More Education and Challenging Stigma.

BACKGROUND: Data show that patients with autoimmune hepatitis have significantly reduced quality-of-life and that corticosteroids carry marked side effects. AIMS: This study explored patients' experiences of autoimmune hepatitis and its treatments; key aspects for developing safe and effective new approaches to therapy. METHODS: An anonymised, internet-based survey collected data including patient demographics, treatments, side-effects, impact on day-to-day life, sources of support and attitudes towards autoimmune hepatitis between December 2019-January 2020. Semi-structured interviews were conducted with 13 patients to further explore their support networks, treatment experiences and health priorities. Descriptive and quantitative analyses were undertaken using R and free text responses were subject to thematic analysis. RESULTS: In total, 270 survey responses were received (median age 55 years and 94% female). Perceived medication side-effects were reported by 66% (169/257) and 73% responded negatively about their experience of corticosteroids. The majority (62·3% [(109/175]) would 'definitely' or 'probably' consider clinical trial participation to improve their care. Only 18·7% (31/166) reported access to a specialist liver nurse and nearly half were involved in support groups. Interview and survey data suggested that major issues were stigma, loss of control and fatigue. CONCLUSIONS: This study provides insights into the realities of living with autoimmune hepatitis with clear issues around lack of support networks, need for patient empowerment and stigma surrounding liver disease. Patient priorities are better therapies to slow disease progression, avoiding corticosteroids and minimising side-effects. Patient willingness to participate in trials suggests that they are achievable provided they have the right design and clinical endpoints.

Constraints and affordances for UK doctors-in-training to exercise agency: A dialogical analysis.

INTRODUCTION: The goal of medical education is to develop clinicians who have sufficient agency (capacity to act) to practise effectively in clinical workplaces and to learn from work throughout their careers. Little research has focused on experiences of organisational structures and the role of these in constraining or affording agency. The aim of this study was to identify priorities for organisational change, by identifying and analysing key moments of agency described by doctors-in-training. METHODS: This was a secondary qualitative analysis of data from a large national mixed methods research programme, which examined the work and wellbeing of UK doctors-in-training. Using a dialogical approach, we identified 56 key moments of agency within the transcripts of 22 semi-structured interviews with doctors based across the UK in their first year after graduation. By analysing action within the key moments from a sociocultural theoretical perspective, we identified tangible changes that healthcare organisations can make to afford agency. RESULTS: When talking about team working, participants gave specific descriptions of agency (or lack thereof) and used adversarial metaphors, but when talking about the wider healthcare system, their dialogue was disengaged and they appeared resigned to having no agency to shape the agenda. Organisational changes that could afford greater agency to doctors-in-training were improving induction, smoothing peaks and troughs of responsibility and providing a means of timely feedback on patient care. CONCLUSIONS: Our findings identified some organisational changes needed for doctors-in-training to practise effectively and learn from work. The findings also highlight a need to improve workplace-based team dynamics and empower trainees to influence policy. By targeting change, healthcare organisations can better support doctors-in-training, which will ultimately benefit patients.

Distal femoral varus osteotomy combined with tibial plateau fresh osteochondral allograft for post-traumatic osteoarthritis of the knee.

PURPOSE: This study was conducted to examine the long-term survivorship and functional outcome of distal femoral varus osteotomy with fresh osteochondral allograft following failed lateral tibial plateau fracture surgery. We hypothesized that this procedure would be associated with a low rate of conversion to total knee arthroplasty (TKA) at medium to long-term follow-up. METHODS: A consecutive series of 27 of distal femoral varus osteotomy combined with fresh osteochondral allograft following (27 patients) conducted between January 1981 and January 2005 for failed lateral tibial plateau fracture was retrospectively reviewed. Outcome measures included the Knee Society Knee Score (KSKS) and Knee Society Function Score (KSFS) and conversion rates to TKA. RESULTS: The study group consisted of 15 females (55.6 %) and 12 males (44.4 %), with a median age of 41.2 years (range 17-62 years). The median follow-up was 13.3 years (range 2-31 years). The knee function scores improved significantly at 2 years post-surgery (p < 0.01) from a median of 54.6 points preoperatively to 83.8 points (KSKS) and median of 50.6 points to 71.1 points (KSFS) at 2 years post-distal femoral varus osteotomy with fresh osteochondral allograft following surgery. At most recent follow-up, 4/27 patients had required conversion to TKA, and one patient had fractured the FOCA, requiring revision of the allograft. The survivorship for distal femoral varus osteotomy with fresh osteochondral allograft following was 88.9 ± 4.6 % at 10 years, 71.4 ± 18.1 % at 15 years, and 23.8 ± 11.1 % at 20 years. CONCLUSION: The use of distal femoral varus osteotomy combined with fresh osteochondral allograft following in patients with failed lateral tibial plateau fracture results in the majority of patients having good or excellent clinical outcomes and significantly delays the need for TKA in most patients. LEVEL OF EVIDENCE: Case series, Level IV.

Carving and making space through dance - Older people using dance to experience their ageing body and challenge ageist discourse.

Drawing on qualitative data from a study of older adults' participation in a contemporary dance group, this paper asks what can be gained from new materialist concepts of the older body, and how they can expand cultural gerontological thinking about embodiment. This paper examines the connections between the older body, movement, thoughts, words and spaces, arguing that dance demonstrates that there is a spatial dimension to embodiment. In drawing from models of materiality emerging in gerontology, this paper provides insights about the experience of age, questioning fundamental categorizations promoted in Western culture, and re-thinks agency in relation to the body and space. Emphasising the importance of the material world in the production of the social has important implications in terms of understanding the experience of ageing within an ageist society.

How cultural capital, habitus and class influence the responses of older adults to the field of contemporary visual art.

This article explores the responses of 38 older people to contemporary visual art through the results of a 28-month study entitled, Contemporary Visual Art and Identity Construction: Wellbeing amongst Older People. A framework for the analysis is provided by previous work on the consumption of art and by Bourdieu's constructs of cultural capital, habitus and field. Five groups of older people, with a range of different backgrounds, were taken to galleries and their responses were recorded, transcribed and analysed. It is concluded that participants' responses are influenced by their cultural capital, habitus and class-which, in turn, are affected by their life course experiences. Those who could not recognise the field (e.g., did not view contemporary art as "art") created their own meanings that they associated with the artworks. Evidence indicates that group dynamics and class mobility are likewise important. Participants also used the experience to respond to real or anticipated age-associated deficits.

How is transition to medical practice shaped by a novel transitional role? A mixed-methods study.

OBJECTIVES: This study considered a novel 'interim' transitional role for new doctors (termed 'FiY1', interim Foundation Year 1), bridging medical school and Foundation Programme (FP). Research questions considered effects on doctors' well-being and perceived preparedness, and influences on their experience of transition. While FiY1 was introduced in response to the COVID-19 pandemic, findings have wider and ongoing relevance. DESIGN: A sequential mixed-methods study involved two questionnaire phases, followed by semi-structured interviews. In phase 1, questionnaires were distributed to doctors in FiY1 posts, and in phase 2, to all new FP doctors, including those who had not undertaken FiY1. SETTING AND PARTICIPANTS: Participants were newly qualified doctors from UK medical schools, working in UK hospitals in 2020. 77% (n=668) of all participants across all phases had undertaken FiY1 before starting FP in August. The remainder started FP in August with varying experience beforehand. OUTCOME MEASURES: Questionnaires measured preparedness for practice, stress, anxiety, depression, burnout, identity, and tolerance of ambiguity. Interviews explored participants' experiences in more depth. RESULTS: Analysis of questionnaires (phase 1 n=441 FiY1s, phase 2 n=477 FiY1s, 196 non-FiY1s) indicated that FiY1s felt more prepared than non-FiY1 colleagues for starting FP in August (ß=2.71, 95% CI=2.21 to 3.22, p<0.0001), which persisted to October (ß=1.85, CI=1.28 to 2.41, p<0.0001). Likelihood of feeling prepared increased with FiY1 duration (OR=1.02, CI=1.00 to 1.03, p=0.0097). Despite challenges to well-being during FiY1, no later detriment was apparent. Thematic analysis of interview data (n=22) identified different ways, structural and interpersonal, in which the FiY1 role enhanced doctors' emerging independence supported by systems and colleagues, providing 'supported autonomy'. CONCLUSIONS: An explicitly transitional role can benefit doctors as they move from medical school to independent practice. We suggest that the features of supported autonomy are those of institutionalised liminality-a structured role 'betwixt and between' education and practice-and this lens may provide a guide to optimising the design of such posts.

Neonatal and maternal outcomes following SARS-CoV-2 infection and COVID-19 vaccination: a population-based matched cohort study.

Understanding the impact of SARS-CoV-2 infection and COVID-19 vaccination in pregnancy on neonatal and maternal outcomes informs clinical decision-making. Here we report a national, population-based, matched cohort study to investigate associations between SARS-CoV-2 infection and, separately, COVID-19 vaccination just before or during pregnancy and the risk of adverse neonatal and maternal outcomes among women in Scotland with a singleton pregnancy ending at ≥20 weeks gestation. Neonatal outcomes are stillbirth, neonatal death, extended perinatal mortality, preterm birth (overall, spontaneous, and provider-initiated), small-for-gestational age, and low Apgar score. Maternal outcomes are admission to critical care or death, venous thromboembolism, hypertensive disorders of pregnancy, and pregnancy-related bleeding. We use conditional logistic regression to derive odds ratios adjusted for socio-demographic and clinical characteristics (aORs). We find that infection is associated with an increased risk of preterm (aOR=1.36, 95% Confidence Interval [CI] = 1.16-1.59) and very preterm birth (aOR = 1.90, 95% CI 1.20-3.02), maternal admission to critical care or death (aOR=1.72, 95% CI = 1.39-2.12), and venous thromboembolism (aOR = 2.53, 95% CI = 1.47-4.35). We find no evidence of increased risk for any of our outcomes following vaccination. These data suggest SARS-CoV-2 infection during pregnancy is associated with adverse neonatal and maternal outcomes, and COVID-19 vaccination remains a safe way for pregnant women to protect themselves and their babies against infection.

Confirmed SARS-CoV-2 infection in Scottish neonates 2020-2022: a national, population-based cohort study.

OBJECTIVES: To examine neonates in Scotland aged 0-27 days with SARS-CoV-2 infection confirmed by viral testing; the risk of confirmed neonatal infection by maternal and infant characteristics; and hospital admissions associated with confirmed neonatal infections. DESIGN: Population-based cohort study. SETTING AND POPULATION: All live births in Scotland, 1 March 2020-31 January 2022. RESULTS: There were 141 neonates with confirmed SARS-CoV-2 infection over the study period, giving an overall infection rate of 153 per 100 000 live births (141/92 009, 0.15%). Among infants born to women with confirmed infection around the time of birth, the confirmed neonatal infection rate was 1812 per 100 000 live births (15/828, 1.8%). Two-thirds (92/141, 65.2%) of neonates with confirmed infection had an associated admission to neonatal or (more commonly) paediatric care. Six of these babies (6/92, 6.5%) were admitted to neonatal and/or paediatric intensive care; however, none of these six had COVID-19 recorded as their main diagnosis. There were no neonatal deaths among babies with confirmed infection. IMPLICATIONS AND RELEVANCE: Confirmed neonatal SARS-CoV-2 infection was uncommon over the first 23 months of the pandemic in Scotland. Secular trends in the neonatal confirmed infection rate broadly followed those seen in the general population, although at a lower level. Maternal confirmed infection at birth was associated with an increased risk of neonatal confirmed infection. Two-thirds of neonates with confirmed infection had an associated admission to hospital, with resulting implications for the baby, family and services, although their outcomes were generally good. Ascertainment of confirmed infection depends on the extent of testing, and this is likely to have varied over time and between groups: the extent of unconfirmed infection is inevitably unknown.

A population-based matched cohort study of major congenital anomalies following COVID-19 vaccination and SARS-CoV-2 infection.

Evidence on associations between COVID-19 vaccination or SARS-CoV-2 infection and the risk of congenital anomalies is limited. Here we report a national, population-based, matched cohort study using linked electronic health records from Scotland (May 2020-April 2022) to estimate the association between COVID-19 vaccination and, separately, SARS-CoV-2 infection between six weeks pre-conception and 19 weeks and six days gestation and the risk of [1] any major congenital anomaly and [2] any non-genetic major congenital anomaly. Mothers vaccinated in this pregnancy exposure period mostly received an mRNA vaccine (73.7% Pfizer-BioNTech BNT162b2 and 7.9% Moderna mRNA-1273). Of the 6731 babies whose mothers were vaccinated in the pregnancy exposure period, 153 had any anomaly and 120 had a non-genetic anomaly. Primary analyses find no association between any vaccination and any anomaly (adjusted Odds Ratio [aOR] = 1.01, 95% Confidence Interval [CI] = 0.83-1.24) or non-genetic anomalies (aOR = 1.00, 95% CI = 0.81-1.22). Primary analyses also find no association between SARS-CoV-2 infection and any anomaly (aOR = 1.02, 95% CI = 0.66-1.60) or non-genetic anomalies (aOR = 0.94, 95% CI = 0.57-1.54). Findings are robust to sensitivity analyses. These data provide reassurance on the safety of vaccination, in particular mRNA vaccines, just before or in early pregnancy.

SARS-CoV-2 infection and COVID-19 vaccination rates in pregnant women in Scotland.

Population-level data on COVID-19 vaccine uptake in pregnancy and SARS-CoV-2 infection outcomes are lacking. We describe COVID-19 vaccine uptake and SARS-CoV-2 infection in pregnant women in Scotland, using whole-population data from a national, prospective cohort. Between the start of a COVID-19 vaccine program in Scotland, on 8 December 2020 and 31 October 2021, 25,917 COVID-19 vaccinations were given to 18,457 pregnant women. Vaccine coverage was substantially lower in pregnant women than in the general female population of 18-44 years; 32.3% of women giving birth in October 2021 had two doses of vaccine compared to 77.4% in all women. The extended perinatal mortality rate for women who gave birth within 28 d of a COVID-19 diagnosis was 22.6 per 1,000 births (95% CI 12.9-38.5; pandemic background rate 5.6 per 1,000 births; 452 out of 80,456; 95% CI 5.1-6.2). Overall, 77.4% (3,833 out of 4,950; 95% CI 76.2-78.6) of SARS-CoV-2 infections, 90.9% (748 out of 823; 95% CI 88.7-92.7) of SARS-CoV-2 associated with hospital admission and 98% (102 out of 104; 95% CI 92.5-99.7) of SARS-CoV-2 associated with critical care admission, as well as all baby deaths, occurred in pregnant women who were unvaccinated at the time of COVID-19 diagnosis. Addressing low vaccine uptake rates in pregnant women is imperative to protect the health of women and babies in the ongoing pandemic.

Pregnancy outcomes after SARS-CoV-2 infection in periods dominated by delta and omicron variants in Scotland: a population-based cohort study.

BACKGROUND: Evidence suggests that the SARS-CoV-2 omicron (B.1·1.529) is associated with lower risks of adverse outcomes than the delta (B.1.617.2) variant among the general population. However, little is known about outcomes after omicron infection in pregnancy. We aimed to assess and compare short-term pregnancy outcomes after SARS-CoV-2 delta and omicron infection in pregnancy. METHODS: We did a national population-based cohort study of women who had SARS-CoV-2 infection in pregnancy between May 17, 2021, and Jan 31, 2022. The primary maternal outcome was admission to critical care within 21 days of infection or death within 28 days of date of infection. Pregnancy outcomes were preterm birth and stillbirth within 28 days of infection. Neonatal outcomes were death within 28 days of birth, and low Apgar score (<7 of 10, for babies born at term) or neonatal SARS-CoV-2 infection in births occurring within 28 days of maternal infection. We used periods when variants were dominant in the general Scottish population, based on 50% or more of cases being S-gene positive (delta variant, from May 17 to Dec 14, 2021) or S-gene negative (omicron variant, from Dec 15, 2021, to Jan 31, 2022) as surrogates for variant infections. Analyses used logistic regression, adjusting for maternal age, deprivation quintile, ethnicity, weeks of gestation, and vaccination status. Sensitivity analyses included restricting the analysis to those with first confirmed SARS-CoV-2 infection and using periods when delta or omicron had 90% or more predominance. FINDINGS: Between May 17, 2021, and Jan 31, 2022, there were 9923 SARS-CoV-2 infections in 9823 pregnancies, in 9817 women in Scotland. Compared with infections in the delta-dominant period, SARS-CoV-2 infections in pregnancy in the omicron-dominant period were associated with lower maternal critical care admission risk (0·3% [13 of 4968] vs 1·8% [89 of 4955]; adjusted odds ratio 0·25, 95% CI 0·14-0·44) and lower preterm birth within 28 days of infection (1·8% [37 of 2048] vs 4·2% [98 of 2338]; 0·57, 95% CI 0·38-0·87). There were no maternal deaths within 28 days of infection. Estimates of low Apgar scores were imprecise due to low numbers (5 [1·2%] of 423 with omicron vs 11 [2·1%] of 528 with delta, adjusted odds ratio 0·72, 0·23-2·32). There were fewer stillbirths in the omicron-dominant period than in the delta-dominant period (4·3 [2 of 462] per 1000 births vs 20·3 [13 of 639] per 1000) and no neonatal deaths during the omicron-dominant period (0 [0 of 460] per 1000 births vs 6·3 [4 of 626] per 1000 births), thus numbers were too small to support adjusted analyses. Rates of neonatal infection were low in births within 28 days of maternal SARS-CoV-2 infection, with 11 cases of neonatal SARS-CoV-2 in the delta-dominant period, and 1 case in the omicron-dominant period. Of the 15 stillbirths, 12 occurred in women who had not received two or more doses of COVID-19 vaccination at the time of SARS-CoV-2 infection in pregnancy. All 12 cases of neonatal SARS-CoV-2 infection occurred in women who had not received two or more doses of vaccine at the time of maternal infection. Findings in sensitivity analyses were similar to those in the main analyses. INTERPRETATION: Pregnant women infected with SARS-CoV-2 were substantially less likely to have a preterm birth or maternal critical care admission during the omicron-dominant period than during the delta-dominant period. FUNDING: Wellcome Trust, Tommy's charity, Medical Research Council, UK Research and Innovation, Health Data Research UK, National Core Studies-Data and Connectivity, Public Health Scotland, Scottish Government Health and Social Care, Scottish Government Chief Scientist Office, National Research Scotland.

A population-based matched cohort study of early pregnancy outcomes following COVID-19 vaccination and SARS-CoV-2 infection.

Data on the safety of COVID-19 vaccines in early pregnancy are limited. We conducted a national, population-based, matched cohort study assessing associations between COVID-19 vaccination and miscarriage prior to 20 weeks gestation and, separately, ectopic pregnancy. We identified women in Scotland vaccinated between 6 weeks preconception and 19 weeks 6 days gestation (for miscarriage; n = 18,780) or 2 weeks 6 days gestation (for ectopic; n = 10,570). Matched, unvaccinated women from the pre-pandemic and, separately, pandemic periods were used as controls. Here we show no association between vaccination and miscarriage (adjusted Odds Ratio [aOR], pre-pandemic controls = 1.02, 95% Confidence Interval [CI] = 0.96-1.09) or ectopic pregnancy (aOR = 1.13, 95% CI = 0.92-1.38). We undertook additional analyses examining confirmed SARS-CoV-2 infection as the exposure and similarly found no association with miscarriage or ectopic pregnancy. Our findings support current recommendations that vaccination remains the safest way for pregnant women to protect themselves and their babies from COVID-19.

Exploring the theoretical foundations of visual art programmes for people living with dementia.

Despite the growing international innovations for visual arts interventions in dementia care, limited attention has been paid to their theoretical basis. In response, this paper explores how and why visual art interventions in dementia care influence changes in outcomes. The theory building process consists of a realist review of primary research on visual art programmes. This aims to uncover what works, for whom, how, why and in what circumstances. We undertook a qualitative exploration of stakeholder perspectives of art programmes, and then synthesised these two pieces of work alongside broader theory to produce a conceptual framework for intervention development, further research and practice. This suggests effective programmes are realised through essential attributes of two key conditions (provocative and stimulating aesthetic experience; dynamic and responsive artistic practice). These conditions are important for cognitive, social and individual responses, leading to benefits for people with early to more advanced dementia. This work represents a starting point at identifying theories of change for arts interventions, and for further research to critically examine, refine and strengthen the evidence base for the arts in dementia care. Understanding the theoretical basis of interventions is important for service development, evaluation and implementation.

Understanding the impact of visual arts interventions for people living with dementia: a realist review protocol.

BACKGROUND: Arts-based activities are being increasingly suggested as a valuable activity for people living with dementia in terms of countering the negative aspects of their condition. The potential for such programmes to improve a broad range of psychosocial outcomes is suggested in some studies. However, there is largely an absence of rigorous methodology to demonstrate the benefits, and research results are mixed. Practice variability in terms of the content, contexts and implementation of such interventions raises challenges in terms of identifying an optimal arts programme model that could be adopted by other service providers. Understanding how interventions may have the best chance at broad implementation success and uptake is limited. METHODS/DESIGN: A realist review will be undertaken. This aims to understand how visual arts interventions influence outcomes in people living with dementia. The review will explore how the context, that is the circumstances which enable or constrain, affect outcomes through the activation of mechanisms. An early scoping search and a stakeholder survey formulated the preliminary programme theory. A systematic literature search across a broad range of disciplines (arts, humanities, social sciences, health) will be undertaken to identify journal articles and grey literature. Data will be extracted in relation to the programme theory, contextual factors, mechanisms and outcomes and their configurations, background information about the study design and participant characteristics, detail about the quantity ('dose') of an intervention, theoretical perspectives proposed by the authors of the paper and further theorising by the reviewer. Thematic connections/patterns will be sought across the extracted data, identifying patterns amongst contextual factors, the mechanisms they trigger and the associated outcomes. DISCUSSION: Along with stakeholder engagement and validation, this review will help inform the development of an optimal, replicable arts intervention for people with dementia as part of our broader research programme, titled 'Dementia and Imagination' (funded by the Arts and Humanities Research Council). Forthcoming work under this programme of research will test this theoretically informed intervention in three different geographical areas of the UK. The production of freely available practice guidance is a key aspect of dissemination. TRIAL REGISTRATION: PROSPERO registration number CRD42014008702.

How can contemporary art contribute toward the development of social and cultural capital for people aged 64 and older.

PURPOSE: This article focuses on how visiting contemporary art galleries and discussing the artwork in facilitated focus groups affected culturally inactive participants' social and cultural capital. The research is taken from a larger study that explored the contribution that visiting contemporary art galleries made to the well-being of people aged 64 and older. DESIGN AND METHODS: A total of 19 participants were given guided visits around 3 contemporary art galleries in the United Kingdom. Participants were drawn from categories identified as not already actively engaged in cultural activities (men, those with a limiting disability, people from minority ethnic backgrounds, those in lower socioeconomic groups and people living alone). Before and after each visit, focus group interviews were used to gage the impact of participation in the intervention in terms of subjective well-being. Follow-up interviews were held with participants and group leaders 2 years after the visits. RESULTS: Spontaneous reminiscence was a functional part of the discussion that facilitated shifts in participants' social and cultural capital. Participants developed bonding social capital with each other, bridging social capital with group leaders, and linking social capital with gallery staff and researchers. Participants' cultural capital developed in terms of an increase in knowledge and understanding of contemporary art. IMPLICATIONS: Understanding the interplay between social capital, cultural capital, and reminiscence has implications for programmers and policy makers trying to engage less culturally engaged participants in the arts. Developing bonding, bridging, and linking social capital and cultural capital through engagement with the arts may have implications for health, particularly among this demographic.