Quality of life in people living with HIV-associated neurocognitive disorder: a scoping review study

Quality of life (QoL) is recognized as an essential end point in the disease management of chronic conditions such as HIV with calls to include good QoL as a 'fourth 90' in the 90-90- 90 testing and treatment targets introduced by World Health Organization in 2016. Cognitive impairments impact a broad spectrum of experiences and are a common issue effecting people living with HIV (PLWH). Despite this, few studies have examined QoL in PLWH who also have a cognitive disorder. This study aimed to synthesize and describe what is known about QoL in those living with HIV-associated neurocognitive disorders (HAND). A scoping review of peer-reviewed literature was conducted to identify how QoL has been investigated and measured in PLWH with HAND, and how PLWH with HAND report and describe their QoL. We searched PsychInfo, Medline, Scopus, and Web of Science along with handsearching reference lists from relevant studies found. Included studies were those published in English after 1st January 2003 which included PLWH with cognitive impairment not due to other pre-existing conditions. Fifteen articles met criteria for inclusion. Two studies measured QoL as a primary aim, with others including QoL assessment as part of a broader battery of outcomes. The MOS-HIV and SF-36 were the most commonly used measures of overall QoL, with findings generally suggestive of poorer overall QoL in PLWH with HAND, compared to PLWH without cognitive impairment. Studies which examined dimensions of QoL focused exclusively on functionality, level of independence, and psychological QoL domains. There is a considerable dearth of research examining QoL in PLWH with HAND. The initiatives which advocate for healthy aging and improved QoL in PLWH must be extended to include and understand the experiences those also living with cognitive impairment. Research is needed to understand the broad experiential impacts of living with these two complex, chronic conditions, to ensure interventions are meaningful to patients and potential benefits are not missed

The U&I study: study protocol for a feasibility randomised controlled trial of a pre-cognitive behavioural therapy digital ‘informed choice’ intervention to improve attitudes towards uptake and implementation of CBT for psychosis

Background: At least 40% of people with psychosis have persistent distressing symptoms despite optimal medication treatment. Cognitive Behaviour Therapy for psychosis (CBTp) is the only NICE recommended individual therapy for psychosis, with effects on symptoms, distress and quality of life. Yet fewer than 20% of service-users receive it and 94% of trusts struggle to provide it. Of those offered it, 22-43% refuse or do not attend. We have developed a new pre-CBTp informed choice intervention to address knowledge and attitudes that influence uptake and implementation and now want to test it in a feasibility trial. Methods: The design is a 2-arm, feasibility RCT, with 1:1 randomisation, stratified by participant group and site. Participants are 40 psychosis patients and 40 clinicians, who are ambivalent towards uptake or implementation of CBTp. Sites are community and inpatient services in Sussex and London. The intervention is a pre-CBT digital psychoeducation intervention designed to address identified knowledge and attitudinal barriers to uptake and implementation of CBTp, incorporating behaviour change mechanisms, and supported by animated introductory, patient and clinician stories. The comparator is the NHS choices website for CBT. The primary aim is to assess clinical feasibility (recruitment, randomization, acceptability, use, delivery, outcome measurement, retention). A secondary aim is a preliminary evaluation of efficacy. Outcomes will be assessed at baseline, post-intervention, and one-month follow up (blind to treatment arm). The primary efficacy outcome is likelihood of offering/taking up CBTp. Secondary outcomes include knowledge and attitudes towards CBTp; illness perceptions; empowerment; psychological wellbeing (patients only); CBTp implementation (clinicians only). Use of the intervention and CBT behaviours during the follow-up period will be recorded, and captured in a feedback questionnaire. Use, acceptability and experience of outcome assessment will be explored in qualitative interviews with participants (n = 6 per group). The efficacy evaluation will report descriptive data, key model parameters and 95% Highest Probability Density intervals in a Bayesian growth model. Discussion: This is the first feasibility trial of a digital ‘informed choice’ decision aid for the implementation of CBTp. If the trial proves feasible and demonstrates preliminary evidence of efficacy, a large multi-site trial will be warranted

Disability rights and robotics: Co-producing futures

This project brought together a team of 25 co-researchers from the University of the West of England, Fairfield Farm College and Wiltshire Centre of Independent Living. The co-researchers are a diverse group including disabled people, carers, students, and academics from social work, psychology and sociology to robotics. Our research team demonstrates a wealth of experiences as some members had both lived experience of disability, in addition to being involved in teaching, learning and research. The research question for the project was:How can robotic technologies support disability rights? Rights are about everyday opportunities to live life to the full, human rights that everyone is entitled to (The Convention on the Rights of Persons with Disabilities (CRPD) 2009 (Enable.un.org, 2019). In this time of rapid social change to our social and work lives, relationships and leisure, there are new technologies that might support disability rights like ‘driverless cars’, smart phones, social media and new robotic technologies. The project had two aims:•to identify priority research questions into disability rights and robotics•to develop the co-production process for future researc

Promoting novelty, rigor, and style in energy social science: towards codes of practice for appropriate methods and research design

A series of weaknesses in creativity, research design, and quality of writing continue to handicap energy social science. Many studies ask uninteresting research questions, make only marginal contributions, and lack innovative methods or application to theory. Many studies also have no explicit research design, lack rigor, or suffer from mangled structure and poor quality of writing. To help remedy these shortcomings, this Review offers suggestions for how to construct research questions; thoughtfully engage with concepts; state objectives; and appropriately select research methods. Then, the Review offers suggestions for enhancing theoretical, methodological, and empirical novelty. In terms of rigor, codes of practice are presented across seven method categories: experiments, literature reviews, data collection, data analysis, quantitative energy modeling, qualitative analysis, and case studies. We also recommend that researchers beware of hierarchies of evidence utilized in some disciplines, and that researchers place more emphasis on balance and appropriateness in research design. In terms of style, we offer tips regarding macro and microstructure and analysis, as well as coherent writing. Our hope is that this Review will inspire more interesting, robust, multi-method, comparative, interdisciplinary and impactful research that will accelerate the contribution that energy social science can make to both theory and practice

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

SummaryBackground Azithromycin has been proposed as a treatment for COVID-19 on the basis of its immunomodulatoryactions. 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-19Therapy [RECOVERY]), several possible treatments were compared with usual care in patients admitted to hospitalwith COVID-19 in the UK. The trial is underway at 176 hospitals in the UK. Eligible and consenting patients wererandomly allocated to either usual standard of care alone or usual standard of care plus azithromycin 500 mg once perday by mouth or intravenously for 10 days or until discharge (or allocation to one of the other RECOVERY treatmentgroups). Patients were assigned via web-based simple (unstratified) randomisation with allocation concealment andwere twice as likely to be randomly assigned to usual care than to any of the active treatment groups. Participants andlocal study staff were not masked to the allocated treatment, but all others involved in the trial were masked to theoutcome data during the trial. The primary outcome was 28-day all-cause mortality, assessed in the intention-to-treatpopulation. 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%) wereeligible and 7763 were included in the assessment of azithromycin. The mean age of these study participants was65·3 years (SD 15·7) and approximately a third were women (2944 [38%] of 7763). 2582 patients were randomlyallocated 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 (median10 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, nosignificant difference was seen in the proportion meeting the composite endpoint of invasive mechanical ventilationor 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 otherprespecified clinical outcomes. Azithromycin use in patients admitted to hospital with COVID-19 should be restrictedto patients in whom there is a clear antimicrobial indication

Investigation by RNA interference of the involvement of heat shock protein 27 and HuR in inflammatory gene expression

Imperial Users onl

Understanding the lived experience research priorities for improving health-related quality of life in people living with HIV with cognitive impairment

Background People living with HIV experience higher rates of cognitive impairment (CI), and at younger ages, than the general population. These individuals report poor health-related quality of life (HRQL), however, interventions aimed at assisting people living with HIV to live well with CI do not currently exist and represent an important un-met need in this population. Objective This study aimed to identify the lived experience research priorities for improving HRQL and identify interventions to support priority areas. Methods A Research Advisory Group was established with 15 lived experience, academic, healthcare, and third sector professionals. Additionally, two semi-structured focus groups were undertaken, with health and third sector professionals and people living with HIV with CI. Participants were asked to rank factors impacting HRQL, identified in prior research, in terms of priority and intervention development. Findings were analysed using a combination of conventional and summative content analysis. Study findings were feedback to our Research Advisory Group. Results Five people living with HIV with CI, recruited through third sector agencies [Male 80%; median age 59 (range 56–78); White British 60%; homosexual 60%], and three healthcare and third sector participants (66% third sector professionals from two local HIV charities; 33% HIV-specific clinical psychologist) took part in two focus groups and ranked interventions targeting improvement in physical function, social connectedness, cognition and perceived control over cognitive health as priority areas. Findings were then fed back to the Research Advisory Group who recommended the development of an illness-specific cognitive rehabilitation programme and improved information provision as important avenues for intervention development. Conclusion Given the absence of meaningful patient and public involvement, intervention, and support guidelines for people living with HIV with CI, this provides a roadmap for future research in this important and growing area of HIV clinical care

How are HIV services in the UK currently identifying and managing patients with cognitive impairment? Results of a national survey

Objectives The 2018 British HIV Association (BHIVA) Standards of Care state that people living with HIV should be questioned annually for symptoms of cognitive or memory decline. If symptoms are identified, screening should be considered and services offered if impairment is detected. We examined the availability of services, along with current practices related to the screening and management of cognitive impairment in people living with HIV, in UK HIV services. Methods A survey was distributed via email to all UK HIV services leads on the BHIVA audit mailing list. Questions related to screening practices, referral pathways, and the management of patients with suspected cognitive impairment. Descriptive analyses were conducted on all data returned. Results In total, 190 surveys were distributed. Of the respondents, 39 (60.6%) stated that they undertook screening for cognitive impairment in their HIV service, and 30 (47.6%) reported not offering a specific service or referral pathway. Awareness of BHIVA screening guidelines was high (49 [84.48%]), yet 15 (30.6%) respondents stated that they were not followed in their service and 41 (71.9%) felt there was a need for training on screening, assessment, and management of cognitive impairment in patients with HIV within their department. Conclusions Despite no directive, a substantial number of HIV services surveyed are routinely screening patients for cognitive impairment without guidance on when to screen and which screening tools should be used. A UK consensus on screening, along with guidance and training for services, may help to resolve this gap in service provision