Securing recruitment and obtaining informed consent in minority ethnic groups in the UK

Background: Previous health research has often explicitly excluded individuals from minority ethnic backgrounds due to perceived cultural and communication difficulties, including studies where there might be language/literacy problems in obtaining informed consent. This study addressed these difficulties by developing audio-recorded methods of obtaining informed consent and recording data. This report outlines 1) our experiences with securing recruitment to a qualitative study investigating alternative methods of data collection, and 2) the development of a standardised process for obtaining informed consent from individuals from minority ethnic backgrounds whose main language does not have an agreed written form. Methods: Two researchers from South Asian backgrounds recruited adults with Type 2 diabetes whose main language was spoken and not written, to attend a series of focus groups. A screening tool was used at recruitment in order to assess literacy skills in potential participants. Informed consent was obtained using audio-recordings of the patient information and recording patients' verbal consent. Participants' perceptions of this method of obtaining consent were recorded. Results: Recruitment rates were improved by using telephone compared to face-to-face methods. The screening tool was found to be acceptable by all potential participants. Audio-recorded methods of obtaining informed consent were easy to implement and accepted by all participants. Attrition rates differed according to ethnic group. Snowballing techniques only partly improved participation rates. Conclusion: Audio-recorded methods of obtaining informed consent are an acceptable alternative to written consent in study populations where literacy skills are variable. Further exploration of issues relating to attrition is required, and a range of methods may be necessary in order to maximise response and participation

Hard to reach and easy to ignore: The drinking careers of young people not in education, employment or training.

Young people’s drinking in the UK remains a matter of medical, social, media and political concern. The notion of transition and drinking styles in the move from childhood to adulthood and education to employment has been central to understanding young people's drinking behaviour but little is known about how the drinking patterns of those not in education or employment both men and women, develop over time. This paper reports on research which aimed to examine the current drinking habits and drinking careers of young people not in education employment and training who are traditionally described as hard to reach. In depth qualitative interviews were undertaken with 23 young people; 15 women and 8 men aged between 14 to 23. The findings are presented in respect of three stages of drinking; starting, continuing or increasing, and decreasing or stopping. The conclusions indicate that for the majority of these young people alcohol is a significant factor in their lives and that peers, gender, time and place combine to structure both their current alcohol use and drinking career. The paper argues that an understanding of young people’s drinking career development and current alcohol use will help target effective social work and multi-agency intervention. Keywords : alcohol; education; employment; social work; young people

Recreational drug use and use of drugs associated with chemsex among HIV-negative and HIV-positive heterosexual men and women attending sexual health and HIV clinics in England

Background: There is little information on the prevalence of recreational drug use among UK heterosexual men and women, in particular on use of drugs associated with ‘chemsex’ within gay communities. The aim of this study was to examine among HIV-negative and HIV-positive heterosexual men and women in England: (i) the prevalence of recreational drug use (including use of drugs associated with chemsex), (ii) socio-economic/lifestyle correlates of drug use, and (iii) the association of drug use with sexual behavior measures and mental health symptoms. Methods: Data are from the AURAH study of HIV-negative individuals attending sexual health clinics across England (2013–2014) and the ASTRA study of HIV-positive individuals attending HIV outpatient clinics in England (2011–2012). Prevalence of recreational drug use (past three months) and associations are presented separately among the four sample groups: HIV-negative (N = 470) and HIV-positive (N = 373) heterosexual men and HIVnegative (N = 676) and HIV-positive (N = 637) women. Results: The age standardized prevalence of any drug use was 22.9%, 17.1%, 15.3%, and 7.1% in the four sample groups respectively. In all groups, cannabis was the drug most commonly used (range from 4.7% to 17.9%) followed by cocaine (1.6% to 8.5%). The prevalence of use of drugs associated with chemsex was very low among HIV-negative participants (1.0% heterosexual men, 0.2% women) and zero among HIV-positive men and women. In age-adjusted analysis, factors linked to drug use overall and/or to cannabis and cocaine use specifically in the four sample groups included Black/mixed Caribbean and white (vs. Black/mixed African) ethnicity, lower level of education , cigarette smoking, and higher risk alcohol consumption. Associations of recreational drug use with measures of condomless sex, depression, and anxiety were observed in the four groups, but were particularly strong/apparent among women. Conclusion: Providers need to be aware of cannabis and cocaine use and its potential link with sexual risk behavior and symptoms of depression and anxiety among heterosexual men and women attending sexual health and HIV clinics

Age, time living with diagnosed HIV infection, and self-rated health.

OBJECTIVES: An increasing proportion of people living with HIV are older adults, who may require specialized care. Adverse physical and psychological effects of HIV infection may be greatest among older people or those who have lived longer with HIV. METHODS: The ASTRA study is a cross-sectional questionnaire study of 3258 HIV-diagnosed adults (2248 men who have sex with men, 373 heterosexual men and 637 women) recruited from UK clinics in 2011-2012. Associations of age group with physical symptom distress (significant distress for at least one of 26 symptoms), depression and anxiety symptoms (scores ≥ 10 on PHQ-9 and GAD-7, respectively), and health-related functional problems (problems on at least one of three domains of the Euroqol 5D-3L)) were assessed, adjusting for time with diagnosed HIV infection, gender/sexual orientation and ethnicity. RESULTS: The age distribution of participants was: < 30 years, 5%; 30-39 years, 23%; 40-49 years, 43%; 50-59 years, 22%; and ≥ 60 years, 7%. Overall prevalences were: physical symptom distress, 56%; depression symptoms, 27%; anxiety symptoms, 22%; functional problems, 38%. No trend was found in the prevalence of physical symptom distress with age [adjusted odds ratio (OR) for trend across age groups, 0.96; 95% confidence interval (CI) 0.89, 1.04; P = 0.36]. The prevalence of depression and anxiety symptoms decreased with age [adjusted OR 0.86 (95% CI 0.79, 0.94; P = 0.001) and adjusted OR 0.85 (95% CI 0.77, 0.94; P = 0.001), respectively], while that of functional problems increased (adjusted OR 1.28; 95% CI 1.17, 1.39; P < 0.001). In contrast, a longer time with diagnosed HIV infection was strongly and independently associated with a higher prevalence of symptom distress, depression symptoms, anxiety symptoms, and functional problems (P < 0.001 for trends, adjusted analysis). CONCLUSIONS: Among people living with HIV, although health-related functional problems were more common with older age, physical symptom distress was not, and mental health was more favourable. These results suggest that a longer time with diagnosed HIV infection, rather than age, is the dominating factor contributing to psychological morbidity and lower quality of life

Attitudes of People in the UK with HIV Who Are Antiretroviral (ART) Naïve to Starting ART at High CD4 Counts for Potential Health Benefit or to Prevent HIV Transmission

Objective To assess if a strategy of early ART to prevent HIV transmission is acceptable to ART naïve people with HIV with high CD4 counts. Design ASTRA is a UK multicentre, cross sectional study of 3258 HIV outpatients in 2011/12. A self-completed questionnaire collected sociodemographic, behavioral and health data, and attitudes to ART; CD4 count was recorded from clinical records. Methods ART naïve participants with CD4 ≥350 cells/µL (n = 281) were asked to agree/disagree/undecided with the statements (i) I would want to start treatment now if this would slightly reduce my risk of getting a serious illness, and (ii) I would want to start treatment now if this would make me less infectious to a sexual partner, even if there was no benefit to my own health. Results Participants were 85% MSM, 76% white, 11% women. Of 281 participants, 49.5% and 45.2% agreed they would start ART for reasons (i) and (ii) respectively; 62.6% agreed with either (i) or (ii); 12.5% agreed with neither; 24.9% were uncertain. Factors independently associated (p<0.1) with agreement to (i) were: lower CD4, more recent HIV diagnosis, physical symptoms, not being depressed, greater financial hardship, and with agreement to (ii) were: being heterosexual, more recent HIV diagnosis, being sexually active. Conclusions A strategy of starting ART at high CD4 counts is likely to be acceptable to the majority of HIV-diagnosed individuals. Almost half with CD4 >350 would start ART to reduce infectiousness, even if treatment did not benefit their own health. However a significant minority would not like to start ART either for modest health benefit or to reduce infectivity. Any change in approach to ART initiation must take account of individual preferences. Transmission models of potential benefit of early ART should consider that ART uptake may be lower than that seen with low CD4 counts

Teaching science skills and knowledge to students with developmental disabilities : a systematic review

A comprehensive review of the literature was conducted to identify current practice on teaching science to students with intellectual disability (ID) and/or Autism Spectrum Disorder (ASD) in relation to two review questions—students' science outcomes and students' and teachers' experiences of the interventions. Six databases related to education, psychology, and science were systematically searched. A detailed protocol can be viewed on PROSPERO (registration number: CRD42017057323). Thirty studies were identified that reported on science interventions and 20 on student/teacher experiences of the interventions. The majority of the studies targeted science vocabulary and concepts. Other targets included inquiry skills and comprehension skills. The majority of the interventions used components of systematic instruction (n = 23). Five studies focused on self‐directed learning and two on comprehension‐based instruction. Students and teachers reported positive experiences of the interventions. The findings suggest that components of systematic instruction in particular might be effective in teaching science content to students with ID and/or ASD. Further research is needed to explore the effectiveness of identified interventions on teaching more complex science skills and with students with severe disabilities. Some limitations related to the search strategy are highlighted

Breast cancer surgery in older women: outcomes of the bridging age gap in breast cancer study

Background In older women breast cancer (BC) surgery is often non-standard or omitted due to concerns about morbidity. The Age Gap prospective multi-centre cohort study aimed to determine factors influencing selection for and outcomes from surgery for older BC patients. Methods Women >70 with operable BC were recruited from 56 UK breast units between 2013-2018. Data on patient and tumour characteristics were correlated with type of surgery to the breast (breast conservation surgery [BCS], mastectomy) and axilla (axillary node clearance [ANC], sentinel node biopsy [SLNB] or no axillary surgery [NAS]) using univariate and multivariate analysis. Oncologic, adverse event and Quality of life (QoL) outcomes were monitored for 2 years. Results Of 3375 recruited women, surgery was performed in 2816. There were 62 bilateral tumours, giving 2854 surgical events. The median age was 76 (range 70-95). Breast surgery comprised mastectomy in 1138, BCS in 1798. Axillary surgery comprised 575 ANC, 2203 SLNB and 76 NAS. Age, frailty, dementia and comorbidities were predictors of mastectomy (RR 1.06, CI 1.05-1.08). Frailty and comorbidity were significant predictors of NAS (RR 0.91, CI 0.87-0.96). The rate of adverse events was moderate (551/2854, 19.3%) with no 30 day mortality. Long term QoL and functional independence were adversely affected by surgery. Conclusions Age, ill health and frailty all impact on surgical decision making for BC. BC surgery is safe with serious adverse events being rare and no mortality. However surgery has a negative impact on QoL and independence which must be considered when counselling patients about choices

Multistate Shigellosis Outbreak and Commercially Prepared Food, United States

In 2000, shigellosis traced to a commercially prepared dip developed in 406 persons nationwide. An ill employee may have inadvertently contaminated processing equipment. This outbreak demonstrates the vulnerability of the food supply and how infectious organisms can rapidly disseminate through point-source contamination of a widely distributed food item

The societal benefits of reducing six behavioural risk factors: an economic modelling study from Australia

BackgroundA large proportion of disease burden is attributed to behavioural risk factors. However, funding for public health programs in Australia remains limited. Government and non-government organisations are interested in the productivity effects on society from reducing chronic diseases. We aimed to estimate the potential health status and economic benefits to society following a feasible reduction in the prevalence of six behavioural risk factors: tobacco smoking; inadequate fruit and vegetable consumption; high risk alcohol consumption; high body mass index; physical inactivity; and intimate partner violence.MethodsSimulation models were developed for the 2008 Australian population. A realistic reduction in current risk factor prevalence using best available evidence with expert consensus was determined. Avoidable disease, deaths, Disability Adjusted Life Years (DALYs) and health sector costs were estimated. Productivity gains included workforce (friction cost method), household production and leisure time. Multivariable uncertainty analyses and correction for the joint effects of risk factors on health status were undertaken. Consistent methods and data sources were used.ResultsOver the lifetime of the 2008 Australian adult population, total opportunity cost savings of AUD2,334 million (95% Uncertainty Interval AUD1,395 to AUD3,347; 64% in the health sector) were found if feasible reductions in the risk factors were achieved. There would be 95,000 fewer DALYs (a reduction of about 3.6% in total DALYs for Australia); 161,000 less new cases of disease; 6,000 fewer deaths; a reduction of 5 million days in workforce absenteeism; and 529,000 increased days of leisure time.ConclusionsReductions in common behavioural risk factors may provide substantial benefits to society. For example, the total potential annual cost savings in the health sector represent approximately 2% of total annual health expenditure in Australia. Our findings contribute important new knowledge about productivity effects, including the potential for increased household and leisure activities, associated with chronic disease prevention. The selection of targets for risk factor prevalence reduction is an important policy decision and a useful approach for future analyses. Similar approaches could be applied in other countries if the data are available.<br /