Exploring and measuring the perceived impact of visible difference upon romantic relationships

Appearance altering or disfiguring conditions can lead to a variety of ‘visible differences.’ The presence of a visible difference may impact negatively upon an individual’s well-being and be associated with psychosocial difficulties, including social anxiety, anxiety, depression, reduced quality of life, unfavourable self-perceptions, and challenging interpersonal interactions. One domain that may be impacted is that of visible difference, appearance concern, and intimate, romantic relationships. This topic has, however, received relatively little attention in the literature. This thesis aimed to address this gap in the literature. This was done via the adoption of a pragmatic, mixed-methods approach, and the execution of three empirical research studies. First, a qualitative exploration was undertaken, involving semi-structured interviews with 22 participants with a variety of visible differences. Three intimacy-specific themes were generated through thematic analysis. These revealed a multitude of impacts, understandings, and experiences connected to this topic. As no measure of these existed, the themes were utilised in the development of draft items in order to create a research scale (named ‘CARRIS’) measuring appearance distress within a romantic context. Data were collected from participants with visible difference and a final sample of n=253 contributed to the second study, an exploratory factor analysis. This helped refine the scale into a parsimonious, three-factor, form, begin the validation process, and indicated some between-group differences. The final study involved the administration of the refined scale and the collection of fresh data from a final sample of n=144 participants in order to confirm the structure of the scale via confirmatory factor analysis. CARRIS’ four-week test-retest reliability (n=49) was also assessed.This thesis explored visible difference and intimate and romantic life. It indicated this as an important component of participants’ experiences of and adjustment to visible difference. It generated, evaluated, and began the validation of a new measure of appearance distress within a romantic context, and introduced the theoretical and clinical implications of such work

Becoming known: Disclosure and exposure of (in)visible difference.

Bodily or physical differences constitute a class of potentially stigmatized characteristics. The existing literature confirms that those with appearance altering or disfiguring conditions (“visible differences”) may experience both felt and enacted stigma and seek to conceal their difference. Furthermore, issues relating to the disclosure or revelation of visible difference are frequently cited. The present study used qualitative methods to explore participants’ experiences of having disclosed otherwise unknown or hidden visible differences to others and considered these experiences within the context of existing theories of the disclosure of stigmatized characteristics. Semistructured interviews were conducted with 15 participants who had a variety of visible differences. The data were analyzed through inductive thematic analysis with the resultant themes indicating participants’ concerns and anxieties related to disclosing their differences, variable levels of agency within, preparation for, and control over the disclosure scenario, the importance of their difference being seen by others, and the personal and interpersonal changes that disclosure could facilitate. In consideration of participants’ experiences of the disclosure of visible difference and the applicability of existing models of disclosure to this scenario, a working framework that incorporates the specific issues relevant to the disclosure of visible differences is proposed. (PsycInfo Database Record (c) 2020 APA, all rights reserved

“The elephant in the room”: Disclosing facial differences

Due to high visibility and low public awareness, people with facial differences (FD) frequently face decisions about whether to explain or disclose their FD. Although disclosure of concealable stigma has been frequently researched, little work has examined disclosure from the perspectives of people with FD, whose stigma is often not concealable. Thematic analysis was used to explore semistructured interviews of adults (n = 16) with diverse FDs. Disclosure approaches varied dependent on the discloser, the disclosee, and the context. Two themes illustrated participants’ approaches to (non)disclosure: agentic and autonomous. Agentic described when participants felt they had no choice in explaining or not explaining their condition, which fell into subthemes of forced disclosure, forced nondisclosure, and unauthorized disclosure. Those who used autonomous approaches made the deliberate decision to disclose or not disclose their FD to others. Autonomous subthemes included social avoidance, concealment, false disclosure, selective disclosure, indiscriminate disclosure, and broadcasting. Three experiential themes—misunderstanding, connection, and empowerment—characterized antecedents, experiences with, and consequences of (non)disclosure. Agentic (non)disclosure and autonomous (non)disclosure were frequently associated with the misunderstanding theme, while autonomous disclosure involved themes of connection and empowerment and was thus experienced as more beneficial. Participants’ advice was to allow people with FD disclosure autonomy. Improved social representation of people with FDs, public awareness, and stigma reduction will help remove the onus of disclosure from individuals with F

Equality in cleft and craniofacial care

This review examines the issue of equality of care amongst those with cleft lip and/or palate in the European Union (EU) and beyond. Issues of equality both between and within national populations are considered, and it is argued that those from countries with smaller healthcare expenditure and who are from marginalised groups are at the greatest risk of, and affected most severely by, healthcare inequalities. The socioeconomic impact of inequality is also discussed. Having reviewed these topics, the goals and activities of the European Cleft and Craniofacial Initiative for Equality in Care Action, formed pursuant to an award from the EU’s European Cooperation in Science and Technology, are introduced. Constituted of an open network of clinicians and researchers committed to exploring and reducing such inequalities, the ongoing Action is formed of multiple working groups examining these issues within the EU and has organised training schools, conferences and short-term scientific missions concerned with these issues. These activities are discussed along with the future directions of the Action, the impact it has had to date and the benefits of the European Cooperation in Science and Technology award

Adjunctive rifampicin for Staphylococcus aureus bacteraemia (ARREST): a multicentre, randomised, double-blind, placebo-controlled trial.

BACKGROUND: Staphylococcus aureus bacteraemia is a common cause of severe community-acquired and hospital-acquired infection worldwide. We tested the hypothesis that adjunctive rifampicin would reduce bacteriologically confirmed treatment failure or disease recurrence, or death, by enhancing early S aureus killing, sterilising infected foci and blood faster, and reducing risks of dissemination and metastatic infection. METHODS: In this multicentre, randomised, double-blind, placebo-controlled trial, adults (≥18 years) with S aureus bacteraemia who had received ≤96 h of active antibiotic therapy were recruited from 29 UK hospitals. Patients were randomly assigned (1:1) via a computer-generated sequential randomisation list to receive 2 weeks of adjunctive rifampicin (600 mg or 900 mg per day according to weight, oral or intravenous) versus identical placebo, together with standard antibiotic therapy. Randomisation was stratified by centre. Patients, investigators, and those caring for the patients were masked to group allocation. The primary outcome was time to bacteriologically confirmed treatment failure or disease recurrence, or death (all-cause), from randomisation to 12 weeks, adjudicated by an independent review committee masked to the treatment. Analysis was intention to treat. This trial was registered, number ISRCTN37666216, and is closed to new participants. FINDINGS: Between Dec 10, 2012, and Oct 25, 2016, 758 eligible participants were randomly assigned: 370 to rifampicin and 388 to placebo. 485 (64%) participants had community-acquired S aureus infections, and 132 (17%) had nosocomial S aureus infections. 47 (6%) had meticillin-resistant infections. 301 (40%) participants had an initial deep infection focus. Standard antibiotics were given for 29 (IQR 18-45) days; 619 (82%) participants received flucloxacillin. By week 12, 62 (17%) of participants who received rifampicin versus 71 (18%) who received placebo experienced treatment failure or disease recurrence, or died (absolute risk difference -1·4%, 95% CI -7·0 to 4·3; hazard ratio 0·96, 0·68-1·35, p=0·81). From randomisation to 12 weeks, no evidence of differences in serious (p=0·17) or grade 3-4 (p=0·36) adverse events were observed; however, 63 (17%) participants in the rifampicin group versus 39 (10%) in the placebo group had antibiotic or trial drug-modifying adverse events (p=0·004), and 24 (6%) versus six (2%) had drug interactions (p=0·0005). INTERPRETATION: Adjunctive rifampicin provided no overall benefit over standard antibiotic therapy in adults with S aureus bacteraemia. FUNDING: UK National Institute for Health Research Health Technology Assessment

Dimethyl fumarate in patients admitted to hospital with COVID-19 (RECOVERY): a randomised, controlled, open-label, platform trial

Dimethyl fumarate (DMF) inhibits inflammasome-mediated inflammation and has been proposed as a treatment for patients hospitalised with COVID-19. This randomised, controlled, open-label platform trial (Randomised Evaluation of COVID-19 Therapy [RECOVERY]), is assessing multiple treatments in patients hospitalised for COVID-19 (NCT04381936, ISRCTN50189673). In this assessment of DMF performed at 27 UK hospitals, adults were randomly allocated (1:1) to either usual standard of care alone or usual standard of care plus DMF. The primary outcome was clinical status on day 5 measured on a seven-point ordinal scale. Secondary outcomes were time to sustained improvement in clinical status, time to discharge, day 5 peripheral blood oxygenation, day 5 C-reactive protein, and improvement in day 10 clinical status. Between 2 March 2021 and 18 November 2021, 713 patients were enroled in the DMF evaluation, of whom 356 were randomly allocated to receive usual care plus DMF, and 357 to usual care alone. 95% of patients received corticosteroids as part of routine care. There was no evidence of a beneficial effect of DMF on clinical status at day 5 (common odds ratio of unfavourable outcome 1.12; 95% CI 0.86-1.47; p = 0.40). There was no significant effect of DMF on any secondary outcome

Dimethyl fumarate in patients admitted to hospital with COVID-19 (RECOVERY): a randomised, controlled, open-label, platform trial

Dimethyl fumarate (DMF) inhibits inflammasome-mediated inflammation and has been proposed as a treatment for patients hospitalised with COVID-19. This randomised, controlled, open-label platform trial (Randomised Evaluation of COVID-19 Therapy [RECOVERY]), is assessing multiple treatments in patients hospitalised for COVID-19 (NCT04381936, ISRCTN50189673). In this assessment of DMF performed at 27 UK hospitals, adults were randomly allocated (1:1) to either usual standard of care alone or usual standard of care plus DMF. The primary outcome was clinical status on day 5 measured on a seven-point ordinal scale. Secondary outcomes were time to sustained improvement in clinical status, time to discharge, day 5 peripheral blood oxygenation, day 5 C-reactive protein, and improvement in day 10 clinical status. Between 2 March 2021 and 18 November 2021, 713 patients were enroled in the DMF evaluation, of whom 356 were randomly allocated to receive usual care plus DMF, and 357 to usual care alone. 95% of patients received corticosteroids as part of routine care. There was no evidence of a beneficial effect of DMF on clinical status at day 5 (common odds ratio of unfavourable outcome 1.12; 95% CI 0.86-1.47; p = 0.40). There was no significant effect of DMF on any secondary outcome

Thigh-length compression stockings and DVT after stroke

Controversy exists as to whether neoadjuvant chemotherapy improves survival in patients with invasive bladder cancer, despite randomised controlled trials of more than 3000 patients. We undertook a systematic review and meta-analysis to assess the effect of such treatment on survival in patients with this disease

Long-term effectiveness of dopamine agonists and monoamine oxidase B inhibitors compared with levodopa as initial treatment for Parkinson\u27s disease (PD MED): A large, open-label, pragmatic randomised trial

\ua9 2014 Elsevier Ltd. Background Whether initial treatment for Parkinson\u27s disease should consist of levodopa, dopamine agonists, or monoamine oxidase type B inhibitors (MAOBI) is uncertain. We aimed to establish which of these three classes of drug, as initial treatment, provides the most effective long-term control of symptoms and best quality of life for people with early Parkinson\u27s disease. Methods In this pragmatic, open-label randomised trial, patients newly diagnosed with Parkinson\u27s disease were randomly assigned (by telephone call to a central office; 1:1:1) between levodopa-sparing therapy (dopamine agonists or MAOBI) and levodopa alone. Patients and investigators were not masked to group assignment. Primary outcomes were the mobility dimension on the 39-item patient-rated Parkinson\u27s disease questionnaire (PDQ-39) quality-of-life scale (range 0-100 with six points defined as the minimally important difference) and cost-effectiveness. Analysis was intention to treat. This trial is registered, number ISRCTN69812316. Findings Between Nov 9, 2000, and Dec 22, 2009, 1620 patients were assigned to study groups (528 to levodopa, 632 to dopamine agonist, 460 to MAOBI). With 3-year median follow-up, PDQ-39 mobility scores averaged 1\ub78 points (95% CI 0\ub75-3\ub70, p=0\ub7005) better in patients randomly assigned to levodopa than those assigned to levodopa-sparing therapy, with no increase or attrition of benefit during 7 years\u27 observation. PDQ-39 mobility scores were 1\ub74 points (95% CI 0\ub70-2\ub79, p=0\ub705) better in patients allocated MAOBI than in those allocated dopamine agonists. EQ-5D utility scores averaged 0\ub703 (95% CI 0\ub701-0\ub705; p=0\ub70002) better with levodopa than with levodopa-sparing therapy; rates of dementia (hazard ratio [HR] 0\ub781, 95% CI 0\ub761-1\ub708, p=0\ub714), admissions to institutions (0\ub786, 0\ub763-1\ub718; p=0\ub74), and death (0\ub785, 0\ub769-1\ub706, p=0\ub717) were not significantly different, but the upper CIs precluded any substantial increase with levodopa compared with levodopa-sparing therapy. 179 (28%) of 632 patients allocated dopamine agonists and 104 (23%) of 460 patients allocated MAOBI discontinued allocated treatment because of side-effects compared with 11 (2%) of 528 patients allocated levodopa (p<0\ub70001). Interpretation Very small but persistent benefits are shown for patient-rated mobility scores when treatment is initiated with levodopa compared with levodopa-sparing therapy. MAOBI as initial levodopa-sparing therapy was at least as effective as dopamine agonists. Funding UK National Institute for Health Research Health Technology Assessment Programme and UK Department of Health

Azithromycin in patients admitted to hospital with COVID-19 (RECOVERY): a randomised, controlled, open-label, platform trial

Background Azithromycin has been proposed as a treatment for COVID-19 on the basis of its immunomodulatory actions. We aimed to evaluate the safety and efficacy of azithromycin in patients admitted to hospital with COVID-19. Methods In this randomised, controlled, open-label, adaptive platform trial (Randomised Evaluation of COVID-19 Therapy [RECOVERY]), several possible treatments were compared with usual care in patients admitted to hospital with COVID-19 in the UK. The trial is underway at 176 hospitals in the UK. Eligible and consenting patients were randomly allocated to either usual standard of care alone or usual standard of care plus azithromycin 500 mg once per day by mouth or intravenously for 10 days or until discharge (or allocation to one of the other RECOVERY treatment groups). Patients were assigned via web-based simple (unstratified) randomisation with allocation concealment and were twice as likely to be randomly assigned to usual care than to any of the active treatment groups. Participants and local study staff were not masked to the allocated treatment, but all others involved in the trial were masked to the outcome data during the trial. The primary outcome was 28-day all-cause mortality, assessed in the intention-to-treat population. The trial is registered with ISRCTN, 50189673, and ClinicalTrials.gov, NCT04381936. Findings Between April 7 and Nov 27, 2020, of 16 442 patients enrolled in the RECOVERY trial, 9433 (57%) were eligible and 7763 were included in the assessment of azithromycin. The mean age of these study participants was 65·3 years (SD 15·7) and approximately a third were women (2944 [38%] of 7763). 2582 patients were randomly allocated to receive azithromycin and 5181 patients were randomly allocated to usual care alone. Overall, 561 (22%) patients allocated to azithromycin and 1162 (22%) patients allocated to usual care died within 28 days (rate ratio 0·97, 95% CI 0·87–1·07; p=0·50). No significant difference was seen in duration of hospital stay (median 10 days [IQR 5 to >28] vs 11 days [5 to >28]) or the proportion of patients discharged from hospital alive within 28 days (rate ratio 1·04, 95% CI 0·98–1·10; p=0·19). Among those not on invasive mechanical ventilation at baseline, no significant difference was seen in the proportion meeting the composite endpoint of invasive mechanical ventilation or death (risk ratio 0·95, 95% CI 0·87–1·03; p=0·24). Interpretation In patients admitted to hospital with COVID-19, azithromycin did not improve survival or other prespecified clinical outcomes. Azithromycin use in patients admitted to hospital with COVID-19 should be restricted to patients in whom there is a clear antimicrobial indication. Funding UK Research and Innovation (Medical Research Council) and National Institute of Health Research