244 results found
Bruton J, Jones K, Jenkins R, et al., 2020, Barriers and facilitators to the participation of people from Black and Minority Ethnic (BME) Communities in health research: a case study from the SCAMP adolescent cohort study, Research for All, ISSN: 2399-8121
Aim: To investigate barriers and facilitators to BME parental consent for children’s involvement in data-sharing aspects of study on mobile phone and wireless device use (SCAMP). To co-produce solutions to increase participation. Methods: Focus groups, telephone interviews, community event, PPI Café; symposium with public, participants and researchers. Results: Barriers were concerns about the research, practical constraints, poor communication. Facilitators were value of research, benefits to others. Solutions to increase participation were community support and clear, simple communication. Overall, trust in the research and the researchers was a key focus of enabling participation.Sharing recommendations: Symposium generated ideas about improving participation including tailoring participant information, engaging with local advocates, involving people in research design and delivery.Key words: Seldom heard, BME, research participation, co-production, PPI, parental consent
Riley S, Ainslie KEC, Eales O, et al., 2020, Resurgence of SARS-CoV-2 in England: detection by community antigen surveillance
<jats:p>BackgroundBased on cases and deaths, transmission of SARS-CoV-2 in England peaked in late March and early April 2020 and then declined until the end of June. Since the start of July, cases have increased, while deaths have continued to decrease.MethodsWe report results from 594,000 swabs tested for SARS-CoV-2 virus obtained from a representative sample of people in England over four rounds collected regardless of symptoms, starting in May 2020 and finishing at the beginning of September 2020. Swabs for the most recent two rounds were taken between 24th July and 11th August and for round 4 between 22nd August and 7th September. We estimate weighted overall prevalence, doubling times between and within rounds and associated reproduction numbers. We obtained unweighted prevalence estimates by sub-groups: age, sex, region, ethnicity, key worker status, household size, for which we also estimated odds of infection. We identified clusters of swab-positive participants who were closer, on average, to other swab-positiveparticipants than would be expected.FindingsOver all four rounds of the study, we found that 72% (67%, 76%) of swab-positive individuals were asymptomatic at the time of swab and in the week prior. The epidemic declined between rounds 1 and 2, and rounds 2 and 3. However, the epidemic was increasing between rounds 3 and 4, with a doubling time of 17 (13, 23) days corresponding to an R value of 1.3 (1.2, 1.4). When analysing round 3 alone, we found that the epidemic had started to grow again with 93% probability. Using only the most recent round 4 data, we estimated a doubling time of 7.7 (5.5, 12.7) days, corresponding to an R value of 1.7 (1.4, 2.0). Cycle threshold values were lower (viral loads were higher) for rounds 1 and 4 than they were for rounds 2 and 3. In round 4, we observed the highest prevalence in participants aged 18 to 24 years at 0.25% (0.16%, 0.41%), increasing from 0.08% (0.04%, 0.18%) in round 3. We observed the lowest prev
Wilson J, Wallace H, Loftus-Keeling M, et al., 2020, Swab-yourself trial with economic monitoring and testing for infections collectively (SYSTEMATIC): Part 1. A diagnostic accuracy, and cost-effectiveness, study comparing clinician-taken versus self-taken rectal and pharyngeal samples for the diagnosis of gonorrhoea and chlamydia, Clinical Infectious Diseases, ISSN: 1058-4838
BackgroundUrogenital testing misses extragenital Neisseria gonorrhoeae (NG) and Chlamydia trachomatis (CT). Extragenital self-sampling is frequently undertaken despite no robust RCT evidence of efficacy. We compared clinician-taken rectal and pharyngeal samples with self-taken samples for diagnostic accuracy and cost in MSM and females.MethodsProspective, convenience, sample in UK sexual health clinic. Randomised order of clinician and self-samples from pharynx and rectum, plus first catch urine (MSM) and vulvovaginal swabs (females), for NG/CT detection.ResultsOf 1793 participants (1284 females, 509 MSM), 116 had NG detected (75 urogenital site, 83 rectum, 72 pharynx); 9.4% infected females and 67.3% MSM were urogenital negative. 276 had CT detected (217 urogenital site, 249 rectum, 63 pharynx); 13.1% infected females and 71.8% MSM were urogenital negative. Sexual history did not identify those with rectal infections. Clinician-rectal and self-rectal positive percent agreements (PPA) for NG detection were 92.8% and 97.6%; clinician-rectal, and self-rectal PPA for CT detection were 95.6% and 97.2%. There was no difference in diagnostic accuracy between clinician and self-taken samples.Clinicians performed swabs quicker than participants so costs were lower. However, in asymptomatic people, non-qualified clinicians would oversee self-swabbing and these costs would be lower than clinician’s.ConclusionsThere was no difference in diagnostic accuracy of clinician compared with self-taken extragenital samples. Sexual history did not identify those with rectal infections so individuals should have extragenital clinician, or self-taken, samples. Clinician swabs cost less than self-swabs but in asymptomatic people, or doing home testing, their costs would be lower than clinician swabs.
Robb C, Loots C, Ahmadi-Abhari S, et al., Associations of social isolation with anxiety and depression during the early COVID-19 Pandemic: a survey of older adults in London, UK, Frontiers in Psychiatry, ISSN: 1664-0640
The COVID-19 pandemic is imposing a profound negative impact on the health and wellbeing of societies and individuals, worldwide. One concern is the effect of social isolation as a result of social distancing on the mental health of vulnerable populations, including older people.Within six weeks of lockdown, we initiated the CHARIOT COVID-19 Rapid Response Study, a bespoke survey of cognitively healthy older people living in London,to investigate the impact of COVID-19 and associated social isolation on mental and physical wellbeing. The sample was drawn from CHARIOT, a register of people over 50 who have consented to be contacted for ageing related research. A total of 327,127 men and women (mean age=70.7 [SD=7.4]) participated in the baseline survey, May-July 2020. Participants were asked about changes to the 14 components of the Hospital Anxiety Depression scale (HADS) after lockdown was introduced in the UK,on 23rd March. A total of 12.8% of participants reported feeling worse on the depression components of HADS (7.8% men and 17.3% women) and 3612.3% reported feeling worse on the anxiety components (7.8% men and 16.5% women). Fewer participants reported feeling improved (1.5% for depression and 4.9% for anxiety). Women, younger participants, those single/widowed/divorced, reporting poor sleep, feelings of loneliness and who reported living alone were more likely to indicate feeling worse on both the depression and/or anxiety components of the HADS. There was a significant negative association between subjective loneliness and worsened components of both depression (OR 17.24, 95% CI 13.20, 22.50) and anxiety (OR 10.85, 95% CI 8.39, 14.03). Results may inform targeted interventions and help guide policy recommendations in reducing the effects of social isolation related to the pandemic, and beyond, on the mental health of older people.
Riley S, Atchison C, Ashby D, et al., 2020, REal-time Assessment of Community Transmission (REACT) of SARS-CoV-2 virus: Study protocol, Wellcome Open Research, Vol: 5, Pages: 200-200
<ns4:p><ns4:bold>Background:</ns4:bold> England, UK has one of the highest rates of confirmed COVID-19 mortality globally. Until recently, testing for the SARS-CoV-2 virus focused mainly on healthcare and care home settings. As such, there is far less understanding of community transmission.</ns4:p><ns4:p> <ns4:bold>Protocol:</ns4:bold> The REal-time Assessment of Community Transmission (REACT) programme is a major programme of home testing for COVID-19 to track progress of the infection in the community.</ns4:p><ns4:p> REACT-1 involves cross-sectional surveys of viral detection (virological swab for RT-PCR) tests in repeated samples of 100,000 to 150,000 randomly selected individuals across England. This examines how widely the virus has spread and how many people are currently infected. The age range is 5 years and above. Individuals are sampled from the England NHS patient list.</ns4:p><ns4:p> REACT-2 is a series of five sub-studies towards establishing the seroprevalence of antibodies to SARS-CoV-2 in England as an indicator of historical infection. The main study (study 5) uses the same design and sampling approach as REACT-1 using a self-administered lateral flow immunoassay (LFIA) test for IgG antibodies in repeated samples of 100,000 to 200,000 adults aged 18 years and above. To inform study 5, studies 1-4 evaluate performance characteristics of SARS-CoV-2 LFIAs (study 1) and different aspects of feasibility, usability and application of LFIAs for home-based testing in different populations (studies 2-4).</ns4:p><ns4:p> <ns4:bold>Ethics and dissemination: </ns4:bold>The study has ethical approval. Results are reported using STROBE guidelines and disseminated through reports to public health bodies, presentations at scientific meetings and open access publications.</ns4:p><ns4:p> <ns4:bold>Conclusions: </ns4:bold>This study provides robust estimat
Ward H, Atchison C, Whitaker M, et al., 2020, Antibody prevalence for SARS-CoV-2 in England following first peak of the pandemic: REACT2 study in 100,000 adults, Publisher: bioRxiv
Background England, UK has experienced a large outbreak of SARS-CoV-2 infection. As in USA and elsewhere, disadvantaged communities have been disproportionately affected. Methods National REal-time Assessment of Community Transmission-2 (REACT-2) seroprevalence study using self-administered lateral flow immunoassay (LFIA) test for IgG among a random population sample of 100,000 adults over 18 years in England, 20 June to 13 July 2020. Results Completed questionnaires were available for 109,076 participants, yielding 5,544 IgG positive results and adjusted (for test performance), re-weighted (for sampling) prevalence of 6.0% (95% CI: 5.8, 6.1). Highest prevalence was in London (13.0% [12.3, 13.6]), among people of Black or Asian (mainly South Asian) ethnicity (17.3% [15.8, 19.1] and 11.9% [11.0, 12.8] respectively) and those aged 18-24 years (7.9% [7.3, 8.5]). Care home workers with client-facing roles had adjusted odds ratio of 3.1 (2.5, 3.8) compared with non-essential workers. One third (32.2%, [31.0-33.4]) of antibody positive individuals reported no symptoms. Among symptomatic cases, the majority (78.8%) reported symptoms during the peak of the epidemic in England in March (31.3%) and April (47.5%) 2020. We estimate that 3.36 million (3.21, 3.51) people have been infected with SARS-CoV-2 in England to end June 2020, with an overall infection fatality ratio of 0.90% (0.86, 0.94). Conclusion The pandemic of SARS-CoV-2 infection in England disproportionately affected ethnic minority groups and health and care home workers. The higher risk of infection in these groups may explain, at least in part, their increased risk of hospitalisation and mortality from COVID-19.
Flower B, Brown JC, Simmons B, et al., 2020, Clinical and laboratory evaluation of SARS-CoV-2 lateral flow assays for use in a national COVID-19 sero-prevalence survey, Thorax, ISSN: 0040-6376
BackgroundAccurate antibody tests are essential to monitor the SARS-CoV-2 pandemic. Lateral flow immunoassays (LFIAs) can deliver testing at scale. However, reported performance varies, and sensitivity analyses have generally been conducted on serum from hospitalised patients. For use in community testing, evaluation of finger-prick self-tests, in non-hospitalised individuals, is required.MethodsSensitivity analysis was conducted on 276 non-hospitalised participants. All had tested positive for SARS-CoV-2 by RT-PCR and were ≥21d from symptom-onset. In phase I we evaluated five LFIAs in clinic (with finger-prick) and laboratory (with blood and sera) in comparison to a) PCR-confirmed infection and b) presence of SARS-CoV-2 antibodies on two “in-house” ELISAs. Specificity analysis was performed on 500 pre-pandemic sera. In phase II, six additional LFIAs were assessed with serum.Findings95% (95%CI [92.2, 97.3]) of the infected cohort had detectable antibodies on at least one ELISA. LFIA sensitivity was variable, but significantly inferior to ELISA in 8/11 assessed. Of LFIAs assessed in both clinic and laboratory, finger-prick self-test sensitivity varied from 21%-92% vs PCR-confirmed cases and 22%-96% vs composite ELISA positives. Concordance between finger-prick and serum testing was at best moderate (kappa 0.56) and, at worst, slight (kappa 0.13). All LFIAs had high specificity (97.2% - 99.8%).InterpretationLFIA sensitivity and sample concordance is variable, highlighting the importance of evaluations in setting of intended use. This rigorous approach to LFIA evaluation identified a test with high specificity (98.6% (95%CI [97.1, 99.4])), moderate sensitivity (84.4% with fingerprick (95%CI [70.5, 93.5])), and moderate concordance, suitable for seroprevalence surveys.
Atchison C, Pristerà P, Cooper E, et al., 2020, Usability and acceptability of home-based self-testing for SARS-CoV-2 antibodies for population surveillance., Clinical Infectious Diseases, ISSN: 1058-4838
BACKGROUND: This study assesses acceptability and usability of home-based self-testing for SARS-CoV-2 antibodies using lateral flow immunoassays (LFIA). METHODS: We carried out public involvement and pilot testing in 315 volunteers to improve usability. Feedback was obtained through online discussions, questionnaires, observations and interviews of people who tried the test at home. This informed the design of a nationally representative survey of adults in England using two LFIAs (LFIA1 and LFIA2) which were sent to 10,600 and 3,800 participants, respectively, who provided further feedback. RESULTS: Public involvement and pilot testing showed high levels of acceptability, but limitations with the usability of kits. Most people reported completing the test; however, they identified difficulties with practical aspects of the kit, particularly the lancet and pipette, a need for clearer instructions and more guidance on interpretation of results. In the national study, 99.3% (8,693/8,754) of LFIA1 and 98.4% (2,911/2,957) of LFIA2 respondents attempted the test and 97.5% and 97.8% of respondents completed it, respectively. Most found the instructions easy to understand, but some reported difficulties using the pipette (LFIA1: 17.7%) and applying the blood drop to the cassette (LFIA2: 31.3%). Most respondents obtained a valid result (LFIA1: 91.5%; LFIA2: 94.4%). Overall there was substantial concordance between participant and clinician interpreted results (kappa: LFIA1 0.72; LFIA2 0.89). CONCLUSION: Impactful public involvement is feasible in a rapid response setting. Home self-testing with LFIAs can be used with a high degree of acceptability and usability by adults, making them a good option for use in seroprevalence surveys.
Bowman L, Kwok KO, Redd R, et al., 2020, Public perceptions and preventive behaviours during the early phase of the COVID-19 pandemic: a comparative study between Hong Kong and the United Kingdom, Publisher: Cold Spring Harbor Laboratory
<jats:p>Background: In the absence of treatments and vaccines, the mitigation of COVID-19 relies on population engagement in non-pharmaceutical interventions, which is driven by their risk perception, anxiety level and knowledge. There may also be regional discrepancies in these drivers due to different historical exposure to disease outbreaks, government responses and cultures. As such, this study compared psycho-behavioral responses in two regions during the early phase of the pandemic.Methods: Comparable cross-sectional surveys were administered among adults in Hong Kong (HK) and the United Kingdom (UK) during the early phase of each respective epidemic. Explanatory variables included demographics, risk perception and knowledge of COVID-19, anxiety level and preventive behaviors. Responses were weighted according to census data. Logistic regression models, including interaction terms to quantify regional differences, were used to assess the association between explanatory variables and the adoption of social-distancing measures.Results: Data of 3431 complete responses (HK:1663; UK:1768) were analysed. Perceived severity differed by region (HK: 97.5%; UK: 20.7%). A large proportion of respondents were abnormally/borderline anxious (HK:64.8%; UK:45.9%) and regarded direct contact with infected individuals as the transmission route of COVID-19 (HK:94.0-98.5%; UK:69.2-93.5%), with HK identifying additional routes. HK reported high levels of adoption of social-distancing (HK:32.4-93.7%; UK:17.6-59.0%) and mask-wearing (HK:98.8%; UK:3.1%). The impact of perceived severity and perceived ease of transmission on the adoption of social-distancing varied by region. In HK, they had no impact, whereas in the UK, those who perceived severity as 'high' were more likely to adopt social-distancing (aOR:1.58-3.01), and those who perceived transmission as 'easy' were prone to both general social-distancing (aOR:2.00, 95% CI:1.57, 2.55) and contact avoidance (aOR:1.80, 95% CI:
Riley S, Ainslie KEC, Eales O, et al., 2020, Transient dynamics of SARS-CoV-2 as England exited national lockdown
<jats:p>Control of the COVID-19 pandemic requires a detailed understanding of prevalence of SARS-CoV-2 virus in the population. Case-based surveillance is necessarily biased towards symptomatic individuals and sensitive to varying patterns of reporting in space and time. The real-time assessment of community transmission antigen study (REACT-1) is designed to overcome these limitations by obtaining prevalence data based on a nose and throat swab RT-PCR test among a representative community-based sample in England, including asymptomatic individuals. Here, we describe results comparing rounds 1 and 2 carried out during May and mid June / early July 2020 respectively across 315 lower tier local authority areas. In round 1 we found 159 positive samples from 120,620 tested swabs while round 2 there were 123 positive samples from 159,199 tested swabs, indicating a downwards trend in prevalence from 0.13% (95% CI, 0.11%, 0.15%) to 0.077% (0.065%, 0.092%), a halving time of 38 (28, 58) days, and an R of 0.89 (0.86, 0.93). The proportion of swab-positive participants who were asymptomatic at the time of sampling increased from 69% (61%, 76%) in round 1 to 81% (73%, 87%) in round 2. Although health care and care home workers were infected far more frequently than other workers in round 1, the odds were markedly reduced in round 2. Age patterns of infection changed between rounds, with a reduction by a factor of five in prevalence in 18 to 24 year olds. Our data were suggestive of increased risk of infection in Black and Asian (mainly South Asian) ethnicities. Using regional and detailed case location data, we detected increased infection intensity in and near London. Under multiple sensitivity analyses, our results were robust to the possibility of false positives. At the end of the initial lockdown in England, we found continued decline in prevalence and a shift in the pattern of infection by age and occupation. Community-based sampling, including asymptomatic individ
Luna Puerta L, Kendall W, Davies B, et al., 2020, The reported impact of public involvement in biobanks: a scoping review, Health Expectations, Vol: 23, ISSN: 1369-6513
BackgroundBiobanks increasingly employ public involvement and engagement strategies, though few studies have explored their impact. This review aims to (a) investigate how the impact of public involvement in biobanks is reported and conceptualized by study authors; in order to (b) suggest how the research community might re‐conceptualize the impact of public involvement in biobanks.MethodsA systematic literature search of three electronic databases and the INVOLVE Evidence Library in January 2019. Studies commenting on the impact of public involvement in a biobank were included, and a narrative review was conducted.Results and discussionForty‐one studies covering thirty‐one biobanks were included, with varying degrees of public involvement. Impact was categorized according to where it was seen: ‘the biobank’, ‘people involved’ and ‘the wider research community’. Most studies reported involvement in a ‘functional’ way, in relation to improved rates of participation in the biobank. Broader forms of impact were reported but were vaguely defined and measured. This review highlights a lack of clarity of purpose and varied researcher conceptualizations of involvement. We pose three areas for further research and consideration by biobank researchers and public involvement practitioners.ConclusionsFunctional approaches to public involvement in biobanking limit impact. This conceptualization of involvement emerges from an entrenched technical understanding that ignores its political nature, complicated by long‐standing disagreement about the values of public involvement. This study urges a re‐imagination of impact, re‐conceptualized as a two‐way learning process. More support will help researchers and members of the public to undergo such reflective exercises.
Pristera P, Papageorgiou V, Kaur M, et al., 2020, Report 14: Online community involvement in COVID-19 research & outbreak response: early insights from a UK perspective
The Patient Experience Research Centre (PERC) at Imperial College London is developing research to explore and understand people’s views about, experiences of and behavioural responses to the outbreak in the UK and elsewhere. To guide that effort and to help inform COVID-19 research and responses more broadly - for example in mathematical modelling and policy - PERC launched an online community involvement initiative that sought rapid, early insight from members of the public and aimed to establish a network for ongoing community engagement.Priority areas for COVID-19 research Vaccine development was considered the most urgent research priority for many respondents. Social studies exploring the public’s experiences, risk perceptions and behaviours during this outbreak were necessary and important according to 95% of the respondents. Such research could:Improve the way the current outbreak response is planned and implemented;Improve the way information and guidance is provided to and understood by the public;Optimise the support provided to communities and vulnerable groups; andImprove future outbreak preparedness.Other recommended areas of research included:Understanding the role of the media in influencing how people react and respond;Furthering our basic understanding of the virus – how it spreads, who it affects the most and why, and whether people achieve and maintain immunity after being infected;Critiquing the UK’s response to the pandemic against that of other countries; andEnsuring lessons can be learnt from this outbreak to better equip us for future outbreaks, and public health emergencies in general.Key unmet needs amongst communities The main challenges described by respondents were ineffective communication, including access to information and information overload; and conflicting guidance and misinformation. Respondents’ described feelings of concern, confusion and, in some cases, panic as a result of these communication a
Atchison CJ, Bowman L, Vrinten C, et al., 2020, Perceptions and behavioural responses of the general public during the COVID-19 pandemic: A cross-sectional survey of UK Adults, Publisher: medRxiv
Objective: To examine risk perceptions and behavioural responses of the UK adult population during the early phase of the COVID-19 epidemic in the UK. Design: A cross-sectional survey Setting: Conducted with a nationally representative sample of UK adults within 48 hours of the UK Government advising the public to stop non-essential contact with others and all unnecessary travel. Participants: 2,108 adults living in the UK aged 18 years and over. Data were collected between March 17 and 18 2020. Main outcome measures: Descriptive statistics for all survey questions, including the number of respondents and the weighted percentages. Logistic regression was used to identify sociodemographic variation in: (1) adoption of social-distancing measures, (2) ability to work from home, and (3) willingness and (4) ability to self-isolate. Results Overall, 1,992 (94.2%) respondents reported taking at least one preventive measure: 85.8% washed their hands with soap more frequently; 56.5% avoided crowded areas and 54.5% avoided social events. Adoption of social-distancing measures was higher in those aged over 70 compared to younger adults aged 18 to 34 years (aOR:1.9; 95% CI:1.1 to 3.4). Those with the lowest household income were six times less likely to be able to work from home (aOR:0.16; 95% CI:0.09 to 0.26) and three times less likely to be able to self-isolate (aOR:0.31; 95% CI:0.16 to 0.58). Ability to self-isolate was also lower in black and minority ethnic groups (aOR:0.47; 95% CI:0.27 to 0.82). Willingness to self-isolate was high across all respondents. Conclusions The ability to adopt and comply with certain NPIs is lower in the most economically disadvantaged in society. Governments must implement appropriate social and economic policies to mitigate this. By incorporating these differences in NPIs among socio-economic subpopulations into mathematical models of COVID-19 transmission dynamics, our modelling of epidemic outcomes and response to COVID-19 can be improved.
Atchison C, Bowman L, Eaton J, et al., 2020, Report 10: Public response to UK Government recommendations on COVID-19: population survey, 17-18 March 2020, 10
On Monday 16th March 2020 the UK government announced new actions to control COVID-19. These recommendations directly affected the entire UK population, and included the following: stop non-essential contact with others; stop all unnecessary travel; start working from home where possible; avoid pubs, clubs, theatres and other such social venues; and to isolate at home for 14 days if anyone in the household has a high temperature or a new and continuous cough. To capture public sentiment towards these recommendations, a YouGov survey was commissioned by the Patient Experience Research Centre (PERC), Imperial College London. The survey was completed by 2,108 UK adults between the dates of 17th – 18th March 2020. The survey results show the following:• 77% reported being worried about the COVID-19 outbreak in the UK.• 48% of adults who have not tested positive for COVID-19 believe it is likely they will be infected at some point in the future.• 93% of adults reported personally taking at least one measure to protect themselves from COVID-19 infection, including:o 83% washed their hands more frequently;o 52% avoided crowded areas;o 50% avoided social events;o 36% avoided public transport;o 31% avoided going out;o 11% avoided going to work;o 28% avoided travel to areas outside the UK.• There is high reported ability and willingness to self-isolate for 7 days* if advised to do so by a health professional (88%).• However only 44% reported being able to work from home. This was higher among managerial and professional workers (60%) than manual, semi-skilled, and casual workers (19%)^, reflecting less flexible job roles for manual and lower grade workers. • 71% reported changing behaviour in response to government guidance. The figure (53%) was lower for young adults (18-24 year-olds).• Hand washing (63%), avoiding persons with symptoms (61%), and covering your sneeze (53%) were more likely to be perceived as ‘very effective&rs
Papageorgiou V, Wharton-Smith A, Campos-Matos I, et al., 2020, Patient data-sharing for immigration enforcement: a qualitative study of healthcare providers in England, BMJ Open, Vol: 10, ISSN: 2044-6055
Aim: To explore healthcare providers’ perceptions and experiences of the implications of a patient data-sharing agreement between National Health Service (NHS) Digital and the Home Office on access to NHS services and quality of care received by migrant patients in England.Design: A qualitative study using semi-structured interviews, thematic analysis and constant-comparison approach.Participants: Eleven healthcare providers and one non-clinical volunteer working in community or hospital-based settings who had experience of migrants accessing NHS England services. Interviews were carried out in 2018.Setting: England.Results: Awareness and understanding of the patient data-sharing agreement varied among participants, who associated this with a perceived lack of transparency by the government. Participants provided insight into how they thought the data-sharing agreement was negatively influencing migrants’ health-seeking behaviour, their relationship with clinicians and the safety and quality of their care. They referred to the policy as a challenge to their core ethical principles, explicitly patient confidentiality and trust, which varied depending on their clinical specialty.Conclusions: A perceived lack of transparency during the policy development process can result in suspicion or mistrust towards government among the health workforce, patients and public, which is underpinned by a notion of power or control. The patient data-sharing agreement was considered a threat to some of the core principles of the NHS and its implementation as adversely affecting healthcare access and patient safety. Future policy development should involve a range of stakeholders including civil society, healthcare professionals and ethicists, and include more meaningful assessments of the impact on healthcare and public health.
Ward H, 2019, Numbers and narratives: approaches to understanding patients’ experiences, XPA & Health Communication, Vol: 2, ISSN: 2604-0999
Rai T, Bruton P, Kall M, et al., 2019, Experience of primary care for people with HIV: a mixed-method analysis, British Journal of General Practice, Vol: 3, ISSN: 0960-1643
BackgroundAdvances in treatment have transformed HIV into a long-term condition (LTC), presenting freshchallenges for health services, HIV specialists and general practitioners (GPs).AimTo explore the experience of people living with HIV (PLHIV) regarding using their GPs.Design and settingA mixed-method analysis using data from two sources: a nationally-representative survey of PLHIVand a qualitative study with London-based PLHIV.MethodsUnivariate logistic regression for quantitative data and Framework analysis for qualitative data.ResultsThe survey had 4,422 participants; the qualitative study included 52 participants. In both studies, GPregistration and HIV status disclosure were high. Similar to general population trends, recent GP usewas associated with poor self-rated health status, co-morbidities, older age and lower socioeconomic status. Two-thirds reported a good experience with GPs; a lower proportion feltcomfortable asking HIV-related questions. Actual or perceived HIV stigma were consistentlyassociated with poor satisfaction. In the interviews, participants with additional LTCs valuedsensitive and consistent support from GPs. Some anticipated, and sometimes experienced, problems relating to HIV status, GPs’ limited experience and time to manage their complex needs. Sometimesthey took their own initiatives to facilitate coordination and communication. For PLHIV, a ‘good’ GPoffered continuity and took time to know and accept them without judgement.ConclusionWe suggest clarification of roles and provision of relevant support to build confidence in GPs andprimary care staff to care for PLHIV. As PLHIV population ages, there is a strong need to developtrusting patient/GP relationships and HIV-friendly GP practices.
Papageorgiou V, Jones K, Mindham R, et al., 2019, ‘Do I really want to do this for the rest of my life?’: a qualitative exploration of participant and study staff perspectives from the Therapy withdrawal in Recovered Dilated cardiomyopathy - Heart Failure (TRED-HF) study, Chronic Living Conference 2020
Ensor S, Davies B, Rai T, et al., 2019, The effectiveness of demand creation interventions for voluntary male medical circumcision for HIV prevention in Sub-Saharan Africa; a mixed methods systematic review, Journal of the International AIDS Society, Vol: 22, Pages: 40-53, ISSN: 1758-2652
IntroductionUNAIDS has recommended that in 14 countries across sub‐Saharan Africa (SSA), 90% of men aged 10 to 29 years should be circumcised by 2021 to help reduce transmission of HIV. To achieve this target demand creation programmes have been widely implemented to increase demand for Voluntary Medical Male Circumcision (VMMC). This review explores the effectiveness of demand creation interventions and factors affecting programme implementation.MethodsWe completed a mixed methods systematic review searching Medline, Embase, Global health, psycINFO and CINAHL databases in August 2018 with no time restrictions. Demand creation interventions conducted in SSA were categorized and quantitative data about VMMC uptake was used to compare relative and absolute effectiveness of interventions. Qualitative data were summarized into themes relevant to the delivery and impact of programmes.Results and discussionEighteen of the 904 titles were included in the review. Effective interventions were identified in each demand creation category: financial incentives, counselling or education, involvement of influencers and novel information delivery. Of the 11 randomized controlled trials (RCTs), the greatest absolute impact on VMMC prevalence was seen with a complex intervention including VMMC promotion training for religious leaders (compared to control: 23% (95% CI 22.8 to 23.8) absolute increase; odds ratio (OR) 3.2 (1.4 to 7.3)). Financial incentives generally produced the largest relative effects with men up to seven‐times more likely to undergo VMMC in the intervention arm compared to control (adjusted OR 7.1 (95% CI 2.4 to 20.8), 7.1% (3.7 to 10.5) absolute increase). Qualitative findings suggest that interventions are more impactful when they are judged appropriate and acceptable by the target population; delivered by people with relevant personal experience; and addressing broader social and cultural influences through partnership with and education of community leaders.Con
Ward H, Garnett GP, Mayer KH, et al., 2019, Maximizing the impact of HIV prevention technologies in sub‐Saharan Africa, Journal of the International AIDS Society, Vol: 22, ISSN: 1758-2652
Ensor S, Davies B, Rai T, et al., 2019, The effectiveness of demand creation interventions for voluntary male medical circumcision for HIV prevention in Sub-Saharan Africa; a mixed methods systematic review, AIDS Impact 2019
Papageorgiou V, Crittendon E, Davies B, et al., 2019, Impact of pre-exposure prophylaxis on the risk of bacterial sexually transmitted infections among cisgender women: systematic review, AIDS Impact 2019
Pristera P, Bruton J, Cooke G, et al., 2019, Perspectives on transmission, treatment and elimination of hepatitis C in HIV-positive MSM in London: a qualitative study, AIDS IMPACT 2019
Ronn M, Mc Grath-Lone L, Davies B, et al., 2019, Evaluation of the performance of nucleic acid amplification tests (NAATs) in detection of chlamydia and gonorrhoea infection in vaginal specimens relative to patient infection status: a systematic review, BMJ Open, Vol: 9, ISSN: 2044-6055
OBJECTIVE: We aimed to assess the performance of NAATs using vaginal specimens in comparison to other urogenital specimens in their ability to detect chlamydia and gonorrhea infection in women.DESIGN: Systematic review.DATA SOURCES: EMBASE and Ovid MEDLINE databases through 3 October 2017.ELIGIBILITY CRITERIA FOR SELECTING STUDIES: We included studies that tested samples from the vagina and ≥1 other site (cervix and/or urine) with ≥2 NAATs for chlamydia and ≥2 NAATs or 1 NAAT and culture for gonorrhoea for each site.DATA EXTRACTION AND SYNTHESIS: We compared the performance of NAATs on specimens taken from the vagina to those from the cervix or urine in diagnosing chlamydia and gonorrhoea infection in women based on patient infection status (PIS). We analysed the performance using vaginal specimens compared to PIS. Performance is defined as the sensitivity of a NAAT using a specimen site and PIS status of the patient. We assessed risk of bias using modified QUADAS-2.RESULTS: Nine publications met the inclusion criteria (eight for chlamydia; six for gonorrhoea) and were narratively reviewed. Pooled summary estimates were not calculated due to the variable methodology and PIS definitions. Tests performed on vaginal specimens accomplished similar performance to cervical and urine specimens for chlamydia (range of performance estimates: vaginal 65-100%, cervical 59-97%, urine 57-100%) and gonorrhoea (vaginal 64-100%, cervical 85-100%, urine 67-94%). Vaginal specimens were estimated to have a performance >80% for chlamydia and gonorrhoea infections in all but one study.CONCLUSIONS: Performance of the NAATs for chlamydia and gonorrhea detection using vaginal specimens was similar to that of cervical and urine specimens relativeto PIS. As vaginal samples have a higher acceptability and lower cost, the study can support clinical testing guidelines by providing evidence that vaginal samples are a suitable alternative to traditional test sites.
Rai T, Bruton P, Day S, et al., 2018, From activism to secrecy: contemporary experiences of living with HIV in London in people diagnosed from 1986 to 2014, Health Expectations, Vol: 21, Pages: 1134-1141, ISSN: 1369-6513
Background:Successes in biomedicine have transformed HIV from a debilitating and frequently fatal infection to a chronic, manageable condition. Objective:To explore how the contemporary metanarrative of HIV as a chronic condition is understood by patients and how it varies depending on when they were diagnosed.Design:Qualitative interviews with fifty-two people living with HIV who were diagnosed during different phases in the history of the epidemic. Setting and participantsParticipants were recruited from two HIV clinics in London to include four “HIV generations”: generation 1 were those who had been diagnosed pre-1997 (pre-ART), generation 2 from 1997-2005 (complex ART), generation 3 from 2006-2012 (simpler ART) and generation 4 were diagnosed in the year before the study (2013-2014). Results: Participants in all HIV generations took their medication as prescribed, attended clinic appointments and were well-informed about their immunological biomarkers. While the pre-treatment generation had been engaged in community endeavours such as activism, public education and use of support groups, those more recently diagnosed had little experience of collective activities and their HIV was essentially a private matter, separate from their social identity. These strategies worked for some however those experiencing clinical or social problems related to HIV or wider issues often relied exclusively on their HIV clinic for wider support. Conclusion:The loss of public conversation around HIV, the imperative for patients to take on greater individual responsibility for HIV management and the streamlining of HIV services alongside reductions in ancillary support services may expose some people to suboptimal health outcomes.
Aghaizu A, Tosswill J, De Angelis D, et al., 2018, HIV incidence among sexual health clinic attendees in England: First estimates for black African heterosexuals using a biomarker, 2009-2013, PLoS ONE, Vol: 13, ISSN: 1932-6203
IntroductionThe HIV epidemic in England is largely concentrated among heterosexuals who are predominately black African and men who have sex with men (MSM). We present for the first time trends in annual HIV incidence for adults attending sexual health clinics, where 80% of all HIV diagnoses are made.MethodsWe identified newly diagnosed incident HIV using a recent infection testing algorithm (RITA) consisting of a biomarker (AxSYM assay, modified to determine antibody avidity), epidemiological and clinical information. We estimated HIV incidence using the WHO RITA formula for cross-sectional studies, with HIV testing data from sexual health clinics as the denominator.ResultsFrom 2009 to 2013, each year, between 9,700 and 26,000 black African heterosexuals (of between 161,000 and 231,000 heterosexuals overall) were included in analyses. For the same period, annually between 19,000 and 55,000 MSM were included. Estimates of HIV incidence among black Africans increased slightly (although non-significantly) from 0.15% (95% C.I.0.05%-0.26%) in 2009 to 0.19% (95% C.I.0.04%-0.34%) in 2013 and was 4-5-fold higher than among all heterosexuals among which it remained stable between 0.03% (95% C.I.0.02%-0.05%) and 0.05% (95% C.I.0.03%-0.07%) over the period. Among MSM incidence was highest and increased (non-significantly) from 1.24% (95%C.I 0.96–1.52%) to 1.46% (95% C.I 1.23%-1.70%) after a peak of 1.52% (95%C.I 1.30%-1.75%) in 2012.ConclusionThese are the first nationwide estimates for trends in HIV incidence among black African and heterosexual populations in England which show black Africans, alongside MSM, remain disproportionately at risk of infection. Although people attending sexual health clinics may not be representative of the general population, nearly half of black Africans and MSM had attended in the previous 5 years. Timely and accurate incidence estimates will be critical in monitoring the impact of the reconfiguration of sexual health services in England
Pufall EL, Kall M, Shahmanesh M, et al., 2018, Sexualized drug use ('chemsex') and high-risk sexual behaviours in HIV-positive men who have sex with men, HIV Medicine, Vol: 19, Pages: 261-270, ISSN: 1464-2662
OBJECTIVES: The incidence of sexually transmitted infections (STIs) and HIV infection remains high in gay, bisexual, and other men who have sex with men (MSM) in the UK, and sexualized drug use ("chemsex") and injecting drug use ("slamsex") may play a part in this. We aimed to characterize HIV-positive MSM engaging in chemsex/slamsex and to assess the associations with self-reported STI diagnoses and sexual behaviours. METHODS: Data from a 2014 survey of people attending HIV clinics in England and Wales were linked to clinical data from national HIV surveillance records and weighted to be nationally representative. Multivariable logistic regression assessed the associations of chemsex and slamsex with self-reported unprotected anal intercourse (UAI), serodiscordant UAI (sdUAI) (i.e. UAI with an HIV-negative or unknown HIV status partner), sdUAI with a detectable viral load (>50 HIV-1 RNA copies/mL), hepatitis C, and bacterial STIs. RESULTS: In the previous year, 29.5% of 392 sexually active participants engaged in chemsex, and 10.1% in slamsex. Chemsex was significantly associated with increased odds of UAI [adjusted odds ratio (AOR) 5.73; P < 0.001], sdUAI (AOR 2.34; P < 0.05), sdUAI with a detectable viral load (AOR 3.86; P < 0.01), hepatitis C (AOR 6.58; P < 0.01), and bacterial STI diagnosis (AOR 2.65; P < 0.01). Slamsex was associated with increased odds of UAI (AOR 6.11; P < 0.05), hepatitis C (AOR 9.39; P < 0.001), and bacterial STI diagnosis (AOR 6.11; P < 0.001). CONCLUSIONS: Three in ten sexually active HIV-positive MSM engaged in chemsex in the past year, which was positively associated with self-reported depression/anxiety, smoking, nonsexual drug use, risky sexual behaviours, STIs, and hepatitis C. Chemsex may therefore play a role in the ongoing HIV and STI epidemics in the UK.
Bruton PJ, Rai T, Day S, et al., 2018, Patient perspectives on the HIV continuum of care in London: a qualitative study of people diagnosed between 1986 and 2014, BMJ Open, Vol: 8, ISSN: 2044-6055
Objectives: To describe the experiences of the HIV treatment cascade of diagnosis, engagement with care and initiation of treatment, from the perspective of patients; we explored whether this differed according to the year of their diagnosis, for example whether they had experienced HIV care in the pre-treatment era.Design: Qualitative interview study with framework analysisSetting: Two large HIV adult outpatient clinics in central London. Participants: 52 HIV positive individuals, 41 men, 11 women, purposively sampled to include people who had been diagnosed at different stages in the history of the epidemic classified as four ‘generations’: pre-1996 (pre-ART), 1997 to 2005 (complex ARTs), 2006 to 2012 (simpler ARTs), 2013 onwards (recent diagnoses).Results: Some important differences were identified; for earlier generations, the visible illness and deaths from AIDS made it harder to engage with care following diagnosis. Subsequent decisions about starting treatment were deeply influenced by the fear of severe side-effects from early antiretroviral therapy (ART). However, despite improvements in ART and life expectancy over the epidemic we found a striking similarity across participants’ accounts of the key stages of the care continuum, regardless of when they were diagnosed. Diagnosis was a major traumatic life event for almost everyone, fear of testing positive or having low self-perceived risk affected the timing of testing and diagnosis, engaging with care was facilitated by a flexible approach from services/clinicians and initiating treatment was a major life decision. Conclusion: We found patients’ experiences are influenced by when they were diagnosed, with earliest cohorts facing substantial challenges. However, being diagnosed with HIV and starting treatment continue to be significant life-altering events even in the era of effective, simple treatments. Despite the advances of biomedical treatment services should continue to recogn
Beardon S, Patel K, Davies B, et al., 2018, Informal Carers' Perspectives on the Delivery of Acute Hospital Care for Patients with Dementia: A Systematic Review, BMC Geriatrics, Vol: 23, ISSN: 1471-2318
Background: Providing high quality acute hospital care for patients with dementia is an increasing challenge asthe prevalence of the disease rises. Informal carers of people with dementia are a critical resource for improvinginpatient care, due to their insights into patients’ needs and preferences. We summarise informal carers’ perspectives ofacute hospital care to inform best practice service delivery.Methods: We conducted a systematic search of bibliographic databases and sought relevant grey literature. We usedthematic synthesis analysis to assimilate results of the studies and describe components of care that influence perceivedquality.Results: Twenty papers met the inclusion criteria. Findings identified four overarching components of care thatinfluenced carer experience and their perceptions of care quality: ‘Patient care’, ‘Staff interactions’, ‘Carer’s situation’ and‘Hospital environment’. Need for improvement was identified in staff training, provision of help with personal careneeds, and dignified treatment of patients. Carers need to be informed, involved and supported during hospitaladmission in order to promote the most positive experience.Conclusion: This review identifies common perspectives of informal carers of people with dementia in the acutehospital setting and highlights important areas to address to improve the experience of an admission for both carerand patient.
Davies B, Turner KME, Frolund M, et al., 2018, Pelvic inflammatory disease risk following negative results from chlamydia nucleic acid amplification tests (NAATs) versus non-NAATs in Denmark: A retrospective cohort study, PLoS Medicine, Vol: 15, ISSN: 1549-1277
BackgroundNucleic Acid Amplification Tests (NAATs) are the recommended test type for diagnosing Chlamydia trachomatis (chlamydia). However, less sensitive diagnostic methods—including direct immunofluorescence (IF) and enzyme-linked immunoassay (ELISA)—remain in use in lower resourced settings. We estimate the risk of pelvic inflammatory disease (PID) following undiagnosed infection in women tested with non-NAATs and estimate the health gain from using accurate diagnostic tests.Methods and findingsWe used Denmark’s national Chlamydia Study dataset to extract all chlamydia tests performed in women aged 15–34 years (1998–2001). Tests were categorised as non-NAAT (IF/ELISA) or NAAT and limited to each woman’s first test in the study period. We linked test data to hospital presentations for PID within 12 months from the Danish National Patient Register. The study included 272,105 women with a chlamydia test, just under half (44.78%, n = 121,857) were tested using NAATs. Overall, 6.38% (n = 17,353) tested positive for chlamydia and 0.64% (n = 1,732) were diagnosed with PID within 12 months. The risk of PID following a positive chlamydia test did not differ by test type (NAAT 0.81% [95% CI 0.61–1.00], non-NAAT 0.78% [0.59–0.96]). The risk of PID following a negative test was significantly lower in women tested with NAATs compared to non-NAATs (0.55% [0.51–0.59] compared to 0.69% [0.64–0.73]; adjusted odds ratio (AOR) 0.83 [0.75–0.93]). We estimate that 18% of chlamydia infections in women tested with a non-NAAT were undiagnosed and that the risk of progression from undiagnosed chlamydia infection to PID within 12 months was 9.52% (9.30–9.68). Using non-NAATs could lead to an excess 120 cases of PID per 100,000 women tested compared to using NAATs. The key limitations of this study are under ascertainment of PID cases, misclassification bias in chlamydia and PID exposure status, bias to the association
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