How older people living with HIV narrate their quality of life: Tensions with quantitative approaches to quality-of-life research

This article draws on life-history interviews with older (aged 50+) people living with HIV in England to uncover the interpretive practices in which they engaged as they evaluated their own quality of life (QoL). Our paper highlights the distinctive insights that biographical and narrative approaches can bring to QoL research. While accounts of subjectively ‘poor’ QoL were relatively straightforward and unequivocally phrased, accounts of subjectively ‘good’ and ‘OK’ QoL were produced using complex interpretive and evaluative practices. These practices involved biographical reflection and contextualization, with participants weighing up and comparing their current lives’ ‘pros’ and ‘cons’, their own lives with the lives of others, and their present lives with lives they had imagined having at the time of interview. Thus, ‘good’ and ‘OK’ QoL were constructed using practical, relational, and interpretive work – features of QoL analytically unavailable in quantitative data gathered through standardised measures (including our own survey data collected from these same participants). Our findings underscore the uneasy fit between QoL’s quantitative measurement and its subjective understandings and evaluations, on the one hand, and the interpretive work that goes into achieving these understandings and evaluations, on the other

Early diagnosis and treatment of HIV infection: magnitude of benefit on short-term mortality is greatest in older adults.

BACKGROUND: the number and proportion of adults diagnosed with HIV infection aged 50 years and older has risen. This study compares the effect of CD4 counts and anti-retroviral therapy (ART) on mortality rates among adults diagnosed aged ≥50 with those diagnosed at a younger age. METHODS: retrospective cohort analysis of national surveillance reports of HIV-diagnosed adults (15 years and older) in England, Wales and Northern Ireland. The relative impacts of age, CD4 count at diagnosis and ART on mortality were determined in Cox proportional hazards models. RESULTS: among 63,805 adults diagnosed with HIV between 2000 and 2009, 9% (5,683) were aged ≥50 years; older persons were more likely to be white, heterosexual and present with a CD4 count <200 cells/mm(3) (48 versus 32% P < 0.01) and AIDS at diagnosis (19 versus 9%, P < 0.01). One-year mortality was higher in older adults (10 versus 3%, P < 0.01) and especially in those diagnosed with a CD4 <200 cells/mm(3) left untreated (46 versus 15%, P < 0.01). While the relative mortality risk reduction from ART initiation at CD <200 cells/mm(3) was similar in both age groups, the absolute risk difference was higher among older adults (40 versus 12% fewer deaths) such that the number needed to treat older adults to prevent one death was two compared with eight among younger adults. CONCLUSIONS: the magnitude of benefit from ART is greater in older adults than younger adults. Older persons should be considered as a target for HIV testing. Coupled with prompt treatment, earlier diagnosis is likely to reduce substantially deaths in this group

Barriers and facilitators to HIV testing in people age 50 and above: a systematic review

Background: Effective therapy means HIV-positive individuals can now experience near normal life expectancy. Despite these advances in treatment, about one in six people living with HIV in the UK are unaware of their infection. Although overall number of new HIV diagnoses have decreased, the number of people diagnosed aged 50 and over is increasing. It may be that there are unique factors associated with the decision to test in this group. This systematic review aims to identify patient and clinician related barriers and facilitators to HIV testing in people aged 50 and above. Methods: A systematic electronic search of MEDLINE, Embase, PsychINFO and CINAHL was conducted on 07/04/2016. Search terms included combinations of words describing HIV, old age, and testing. Papers were assessed for eligibility (published since 01/01/1997, describing barriers/facilitators to testing, research in people ≥50 years, written in English). Data from eligible studies were extracted (including study design, sample size and characteristics, analysis and reported barriers/facilitators to testing). Reported barriers/facilitators were grouped into themes and number of times each was reported was noted. Findings: Electronic searches identified 1752 articles, of which 14 primary studies met the inclusion criteria. A further 3 eligible papers were identified from reference and citation searching. Seventeen papers were included in the review. Most of the studies (n=14) were from the US. The main patient-barriers to non-test were low perceived risk and not being offered/encouraged to test by a healthcare professional (HCP) (reported 5 and 3 times respectively). The main clinician-barrier was preconceptions about older people and discomfort discussing sexuality and risk, reported 5 times. Main facilitators of test were being offered/encouraged to test by a HCP, previous interactions with healthcare services and high perceived risk (all reported >5 times). Interpretation: Clinicians’ beliefs that people ≥50 years are not at risk, or will feel uncomfortable discussing risk and sexuality, were among the most commonly cited barriers to test offer. However, being offered or encouraged to test by a healthcare professional was the most commonly cited facilitator to testing. This shows a divide between clinicians’ preconceptions and patient’s expectations, which may impact on testing rates

Positive Voices: The National Survey of People Living with HIV

Positive Voices is a national HIV patient survey developed by Public Health England in partnership with University College London and Imperial College London. The survey aims to collect population-level information from people living with HIV which will provide valuable insights into the issues that most affect the health and lives of people living with HIV. The results of the survey will be used to monitor and improve existing HIV services and policies and support the provision of new services

HIV incidence among sexual health clinic attendees in England: First estimates for black African heterosexuals using a biomarker, 2009-2013.

INTRODUCTION: The 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. METHODS: We 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. RESULTS: From 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. CONCLUSION: These 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, and any prevention programmes such as pre-exposure prophylaxis

Loss to follow-up after pregnancy among Sub-Saharan Africa-born women living with HIV in England, Wales and Northern Ireland:results from a large national cohort

BACKGROUND: Little is known about retention in human immunodeficiency virus (HIV) care in HIV-positive women after pregnancy in the United Kingdom. We explored the association between loss to follow-up (LTFU) in the year after pregnancy, maternal place of birth and duration of UK residence, in HIV-positive women in England, Wales, and Northern Ireland. METHODS: We analyzed combined data from 2 national data sets: the National Study of HIV in Pregnancy and Childhood; and the Survey of Prevalent HIV Infections Diagnosed, including pregnancies in 2000 to 2009 in women with diagnosed HIV. Logistic regression models were fitted with robust standard errors to estimate adjusted odds ratios (AOR). RESULTS: Overall, 902 of 7211 (12.5%) women did not access HIV care in the year after pregnancy. Factors associated with LTFU included younger age, last CD4 in pregnancy of 350 cells/μL or greater and detectable HIV viral load at the end of pregnancy (all P < 0.001). On multivariable analysis, LTFU was more likely in sub-Saharan Africa-born (SSA-born) women than white UK-born women (AOR, 2.17; 95% confidence interval, 1.50–3.14; P < 0.001). The SSA-born women who had migrated to the UK during pregnancy were 3 times more likely than white UK-born women to be lost to follow-up (AOR, 3.19; 95% confidence interval, 1.94–3.23; P < 0.001). CONCLUSIONS: One in 8 HIV-positive women in England, Wales, and Northern Ireland did not return for HIV care in the year after pregnancy, with SSA-born women, especially those who migrated to the United Kingdom during pregnancy, at increased risk. Although emigration is a possible explanatory factor, disengagement from care may also play a role

Estimating the hospital costs of care for people living with HIV in England using routinely collected data

Background: Understanding the health care activity and associated hospital costs of caring for people living with HIV is an important component of assessing the cost effectiveness of new technologies and for budget planning. Methods: Data collected between 2010 and 2017 from an English HIV treatment centre were combined with national reference costs to estimate the rate of hospital attendances and costs per quarter year, according to demographic and clinical factors. The final dataset included records for 1763 people living with HIV, which was analysed using negative binomial regression models and general estimating equations. Results: People living with HIV experienced an unadjusted average of 0.028 (standard deviation [SD] 0.20) inpatient episodes per quarter, equivalent to one every 9 years, and 1.85 (SD 2.30) outpatient visits per quarter. The unadjusted mean quarterly cost per person with HIV (excluding antiretroviral drug costs) was £439 (SD 604). Outpatient appointments and inpatient episodes accounted for 88% and 6% of total costs, respectively. In adjusted models, low CD4 count was the strongest predictor of inpatient stays and outpatient visits. Low CD4 count and new patient status (having a first visit at the Trust in the last 6 months) were the factors that most increased estimated costs. Associations were weaker or less consistent for demographic factors (age, sex/sexual orientation/ethnicity). Sensitivity analyses suggest that the findings were generally robust to alternative parameter and modelling assumptions. Conclusion: A number of factors predicted hospital activity and costs, but CD4 cell count and new patient status were the strongest. The study results can be incorporated into future economic evaluations and budget impact assessments of HIV‐related technologies

HIV incidence in men who have sex with men in England and Wales 2001-10: a nationwide population study.

BACKGROUND: Control of HIV transmission could be achievable through an expansion of HIV testing of at-risk populations together with ready access and adherence to antiretroviral therapy. To examine whether increases in testing rates and antiretroviral therapy coverage correspond to the control of HIV transmission, we estimated HIV incidence in men who have sex with men (MSM) in England and Wales since 2001. METHODS: A CD4-staged back-calculation model of HIV incidence was used to disentangle the competing contributions of time-varying rates of diagnosis and HIV incidence to observed HIV diagnoses. Estimated trends in time to diagnosis, incidence, and undiagnosed infection in MSM were interpreted against a backdrop of increased HIV testing rates and antiretroviral-therapy coverage over the period 2001-10. FINDINGS: The observed 3·7 fold expansion in HIV testing in MSM was mirrored by a decline in the estimated mean time-to-diagnosis interval from 4·0 years (95% credible interval [CrI] 3·8-4·2) in 2001 to 3·2 years (2·6-3·8) by the end of 2010. However, neither HIV incidence (2300-2500 annual infections) nor the number of undiagnosed HIV infections (7370, 95% CrI 6990-7800, in 2001, and 7690, 5460-10 580, in 2010) changed throughout the decade, despite an increase in antiretroviral uptake from 69% in 2001 to 80% in 2010. INTERPRETATION: CD4 cell counts at HIV diagnosis are fundamental to the production of robust estimates of incidence based on HIV diagnosis data. Improved frequency and targeting of HIV testing, as well as the introduction of ART at higher CD4 counts than is currently recommended, could begin a decline in HIV transmission among MSM in England and Wales. FUNDING: UK Medical Research Council, UK Health Protection Agency