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Description : High-Resource Perspective on Adolescent Transition and Research Priorities

Tags : Pediatrics, Child Health, pediatric practice, pediatrician, health providers, HIV-infected infants, Adolescent Transition

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Slide 1-

Adolescent transition to adult care: what do we know and research priorities High-Resource Perspective On Adolescent Transition and Research Priorities Ali Judd
Slide 2-

Outline What is transition? Who is transitioning? What are health outcomes after transition? What transition interventions work? What do we need to know? Photo credit: UNAIDS/W.Triyasakda
Slide 3-

1 - What is transition? Photo credit: UNAIDS/W.Triyasakda
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Purposeful planned movement of children with special health care needs from child to adult-centred care. Blum 1993 Specialist paediatric → adolescent / transition clinic → adult care Completely integrated care
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ppt slide no 5 content not found
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www.ncb.org.uk/LifeLinks
Slide 7-

Key issues for transition Greater personal autonomy, less parental influence Depends on being aware of diagnosis – Stigma of HIV and family makes this difficult “Children of school age should be told their HIV positive status: younger children should be told incrementally to accommodate their cognitive skills and emotional maturity, in preparation for full disclosure” (WHO 2011)
Slide 8-

2 - Who is transitioning?
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UNAIDS 2015 HIV data, globally Source: UNAIDS 2015 HIV and AIDS estimates
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Estimated number of adolescents living with HIV, 2014 About half of adolescents living with HIV are in just six countries: South Africa, Nigeria, Kenya, India, Mozambique and Tanzania. Source: UNAIDS 2014 HIV and AIDS estimates, July 2015; http://data.unicef.org/hiv-aids/adolescents-young- people.html.
Slide 11-

How many people with perinatal HIV are in Europe? <100 100-<500 500-<1,000 1,000-<2,000 2,000-<4,000 No paediatric Not in EuroCoord Spain Portugal Italy Russia Irelan Sweden ne Russia Denmark d Britain Netherlands Poland Ukrai Germany Belgium France Switz Austria Romania 12,000 18 countries Greece Writing group for the Kids to Adults Working Group & Data Management & Harmonisation Group in EuroCoord. Eurosurveillance 2016,21:ppi=30162.
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0% 20% 40% 60% 80% 100% 1996 1997 1998 1999 2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 2013 2014 2015 Percentage 20+ 15-19 10-14 5-9 1-4 <1 Age of UK/Irish patients with HIV acquired in childhood, 1996-2015 N= 457 624 816 1077 1274 1438 1550 1629 1657 334 383 529 713 955 1186 1360 1506 1605 1643 1661 Transitioning now Already transitioned Presented to care 10-15 years ago
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3 – What are health outcomes after transition? Psychosocial Cognition Sexual health Etc. Outcomes after transition: Adolescent health outcomes: Retention in care Adherence/ viral load CD4 death
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Retention in care after transition 50 adolescents in paediatric care in Baltimore Ryscavage et al, AIDS Care 2016 Behaviourally-acquired HIV Perinatally-acquired HIV Retained at 12 months Pre-transitioLninked to care
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Post-transition outcomes, UK (Collins et al P_82) Linkage of 2 UK datasets: paediatric ↔ adult N=271 adults with perinatal HIV in both Median follow-up in paed care 12 yrs [IQR 6, 16] Median follow-up in adult care = 3 yrs [IQR 1, 6] Factors affecting CD4 after transition CD4 slope stable pre-transfer, and declined post- transfer, after adjustment for other variables Females had lower CD4s overall No effect of changing hospitals at transfer
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Problems of measuring health outcomes after transition Problems with measuring when transition occurred, different outcomes Small sample sizes, confounding Lack of detail on intervention Lack of comparison groups Lack of long-term health outcomes
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Data held together Linkage in progress Linkage possible Linkage not possible Not known No paediatric Not in EuroCoord Sweden Poland GB Ukraine Romania Austria Sweden Ireland Spain Portugal Greece Swiss Netherlands Belgium Are paediatric and adult cohort data within countries linked?
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Adolescent health outcomes Key findings from some of the posters at this Workshop: Occasional missed doses are difficult to voice in the context of VL<50 (P_26 Bernays et al) Similar proportions of young adults with and without perinatal HIV reached milestones (P_76 Mellins et al) Over one in four young adults with perinatal HIV reported missed doses in last 3 days ; 73% relied on a family member to help them take their ART (P_80 Judd et al) Similar prevalence of lifetime sex in young adults with and without perinatal HIV (P_81 Le Prevost et al) Infants of women with perinatal HIV may be at higher risk of low birth weight vs. other HIV+ women (P_90 Jao et al)
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4 – What transition interventions work?
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Interventions to improve retention in care adherence (viral load)
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N=680 15-24 yr olds, adult & paediatric care in 15 clinics in HIV Research Network, USA, 2011 Primary outcome = ≥2 visits ≥90 days apart within 12 months Which services improve retention? Lee et al, AIDS Pat Care STDs 2016, 30: 170-7
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Can we pay adolescents to adhere? Financial incentives + motivational interviewing in 11 young people with perinatal HIV and very poor adherence Foster C et al, Pat Care STDs 2014, 27:28-32 AIDS Baseline: none had VL<50c/ml 12 months: 5 had VL<50c/ml 24 months: 6 had VL<50c/ml
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What do young people think? Meta-synthesis of 18 qualitative studies on transition, covering 368 young people Common themes across diseases: facing changes in significant relationships moving from a familiar to an unknown ward culture being prepared for transfer achieving responsibility Fegran et al, Int J Nursing Studies 2014, 51: 123-135
Slide 24-

CHIVA “Treat me like this” Young people were asked about: how adult clinics differed “More people your age” “It can feel uncomfortable and awkward” “Doctors rely on you to look after yourself” how clinics can support transition “People should be asked first if they are ready to move on to the adult clinic” “Transferring to an adult clinic with a friend, where possible, can be helpful” http://www.chiva.org.uk/files/1014/5079/3341/Guidance_for_Clinics_on_Transition.pdf
Slide 25-

Four small RCTs included – none in HIV “overall certainty of this evidence is low” 9 relevant reviews of adolescent transition Diabetes, mental health, spina bifida etc. “… all highlighted the lack of rigorously evaluated interventions” Campbell et al, Transition of care for adolescents from paediatric services to adult health services, Cochrane Database of Systematic Reviews 2016`
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Problems of evaluating transition interventions Problems with designing interventions: What is “standard of care” for a comparison? Small numbers of patients for many conditions Transferability and generalisability of findings Transition being a relatively recent concept Much of the evidence is likely to come from observational studies
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5 – What do we need to know?
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Longer term clinical outcomes How important is transition readiness? What aspects of care are effective for which populations? What about education, employment? Who has better/ worse outcomes? What are the different models in adult care? Quantitative
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Cost- effectiveness of transition care Learning from family members and clinic staff Youth engagement in design, analysis, dissemination Learning from patient experiences Economic, qualitative, advocacy
Slide 30-

Acknowledgements Mary-Ann Davies Annette Sohn UCL team: Jeannie Collins Di Gibb Ruth Goodall Marthe Le Prevost Claire Thorne Anna Turkova

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