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      Growing up with perinatal HIV: changes in clinical outcomes before and after transfer to adult care in the UK

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          Abstract

          Introduction: With improved survival, adolescents with perinatal HIV (PHIV) are transitioning from paediatric to adult care, but there are few published data on clinical outcomes post-transfer. Using linked data from patients in the national UK/Ireland paediatric cohort (CHIPS) and an adult UK cohort of outpatient clinics (UK CHIC), we describe mortality and changes in immunological status post-transfer.

          Methods: Participants in CHIPS aged ≥13 years by the end of 2013 were linked to the UK CHIC database. Mixed effects models explored changes in CD4 count before and after transfer, including interactions between time and variables where interaction p < 0.05.

          Results: Of 1,215 paediatric participants aged ≥13 years, 271 (22%) had linked data in UK CHIC. One hundred and forty-six (53%) were female, median age at last visit in paediatric care was 17 [interquartile range, IQR 16,18] years, median duration in paediatric care was 11.8 [6.6,15.5] years, and in adult care was 2.9 [1.5,5.9] years. At last visit in paediatric care, 74% ( n = 200) were on ART, increasing to 84% ( n = 228, p = 0.001) at last visit in adult care. In the 12 months before leaving paediatric care, 92 (47%) had two consecutive viral loads >400 copies/mL or one viral load >10,000 copies/mL, and likewise 102 (52%) in the 12 months post-transfer ( p = 0.79). Seven (3%) people died in adult care. In multivariable analysis, CD4 declined as patients approached transition with a greater decline in those with higher nadir CD4 count (mean rates of decline of 3, 13, 15, 30 cells/mm 3 per year for those with nadir CD4 < 100, 100–199, 200–299 and ≥300 cells/mm 3, respectively). Post-transition, CD4 continued to decline in some groups (e.g. black males, −20 (−34, −5) cells/mm 3 per year post transition, p = 0.007)) while it improved in others. Overall CD4 was higher with later year of birth (14 (7, 21) cells/mm 3 per later year). There was no effect of age at transfer or changing hospital at transfer on CD4.

          Conclusions: Our findings suggest that CD4 in adolescents with perinatal HIV in the UK was declining in the period before transition to adult care, and there was some reversal in this trend post-transfer in some groups. Across the transition period, CD4 was higher in those with later birth years, suggesting improvements in clinical care and/or transition planning over time.

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          Most cited references47

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          Global and National Burden of Diseases and Injuries Among Children and Adolescents Between 1990 and 2013: Findings From the Global Burden of Disease 2013 Study.

          The literature focuses on mortality among children younger than 5 years. Comparable information on nonfatal health outcomes among these children and the fatal and nonfatal burden of diseases and injuries among older children and adolescents is scarce.
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            Perinatally acquired HIV infection in adolescents from sub-Saharan Africa: a review of emerging challenges.

            Worldwide, more than three million children are infected with HIV, 90% of whom live in sub-Saharan Africa. As the HIV epidemic matures and antiretroviral treatment is scaled up, children with HIV are reaching adolescence in large numbers. The growing population of adolescents with perinatally acquired HIV infection living within this region presents not only unprecedented challenges but also opportunities to learn about the pathogenesis of HIV infection. In this Review, we discuss the changing epidemiology of paediatric HIV and the particular features of HIV infection in adolescents in sub-Saharan Africa. Longstanding HIV infection acquired when the immune system is not developed results in distinctive chronic clinical complications that cause severe morbidity. As well as dealing with chronic illness, HIV-infected adolescents have to confront psychosocial issues, maintain adherence to drugs, and learn to negotiate sexual relationships, while undergoing rapid physical and psychological development. Context-specific strategies for early identification of HIV infection in children and prompt linkage to care need to be developed. Clinical HIV care should integrate age-appropriate sexual and reproductive health and psychological, educational, and social services. Health-care workers will need to be trained to recognise and manage the needs of these young people so that the increasing numbers of children surviving to adolescence can access quality care beyond specialist services at low-level health-care facilities. Copyright © 2014 Elsevier Ltd. All rights reserved.
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              The creation of a large UK-based multicentre cohort of HIV-infected individuals: The UK Collaborative HIV Cohort (UK CHIC) Study.

              (2004)
              This paper describes the development of the UK Collaborative HIV Cohort (CHIC) Study. The aim of the study is to collate routinely collected data on HIV-infected individuals attending one of seven clinical centres in the UK since 1 January 1996, with the objectives of describing changes over time in the frequency of AIDS-defining illnesses, describing the uptake of and response to highly active antiretroviral therapy (HAART), and identifying factors associated with virological and immunological responses to HAART. By December 2002, demographic, clinical and laboratory data had been collected on HIV-positive patients seen at six of the seven HIV centres. Missing and inconsistent data had been investigated and the datasets audited. Records identified as relating to the same patient had been merged, and cross-checks made with UK death registers to improve the accuracy of death reporting. The cohort currently contains information on 13,833 individuals. Eighty-two per cent of the cohort are male, and the median age was 34 years at first follow-up. The main risk factors for HIV infection have been determined as sex between men (63%) and sex between men and women (24%). Twenty-five per cent of the cohort are known to have developed AIDS, and 8% have died. The UK CHIC Study provides important information on the status of individuals infected with HIV in the UK, and provides a means to study the response to HAART and to monitor changes in the clinical event and death rates that have occurred since the introduction of HAART in the UK.
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                Author and article information

                Contributors
                On behalf of : on behalf of the Collaborative HIV Paediatric Study (CHIPS) Steering Committee and the UK Collaborative HIV Cohort Study (UK CHIC)
                Journal
                J Int AIDS Soc
                J Int AIDS Soc
                ZIAS
                zias20
                Journal of the International AIDS Society
                Taylor & Francis
                1758-2652
                2017
                16 May 2017
                : 20
                : Suppl 3 , Transitioning adolescents through paediatric into adult HIV care: Where are we now?
                : 21577
                Affiliations
                [ a ] MRC Clinical Trials Unit, University College London (UCL), UCL , London, UK
                [ b ] Research Department of Infection and Population Health, UCL , London, UK
                Author notes
                [ § ]Corresponding author: Ali Judd, MRC Clinical Trials Unit at UCL, University College London , Aviation House, 125 Kingsway, London WC2B 6NH, UK. ( a.judd@ 123456ucl.ac.uk )
                Article
                1296723
                10.7448/IAS.20.4.21577
                5577702
                28530042
                3ff24c7b-e467-4e2f-bb96-2c198a5b92d5
                © 2017 Judd A et al; licensee International AIDS Society.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution 3.0 Unported (CC BY 3.0) License ( http://creativecommons.org/licenses/by/3.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 4 October 2016
                : 14 February 2017
                Page count
                Figures: 2, Tables: 3, References: 47, Pages: 81
                Funding
                Funded by: NHS
                Funded by: Bristol-Myers Squibb, Boehringer Ingelheim, GlaxoSmithKline, Roche, Abbott, and Gilead Sciences
                Funded by: UK Medical Research Council
                Award ID: G0000199
                Categories
                Article
                Research Article

                Infectious disease & Microbiology
                adolescent,young person,perinatal,hiv,united kingdom,transition,transfer,adult care,paediatric

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