UK-CAB 47: Transition from paediatric to adult services

Programme

09.30-09.45 Registration, refreshments and expenses
09.45-10.15 Welcome, introductions, UKCAB updates, Gilead pre-meeting
10.15-11.15 The HIV journey from paediatric to adult services – Dr Tomas Campbell, Head of Psychology & Health, Newham Psychological Services
11.15-11.45 Transition from paediatric to adult services…my story! – Sandra Johnson, Positively UK
11.45-12.45 PENTA updates – Dr Ali Judd and Dr Caroline Foster, MRC
12.45-14.00 Lunch
14.00-15.30 Company meeting: Gilead Sciences
15.30-15.35 Break
15.35-16.30 Conference feedback: BHIVA, IAS
16.30 Meeting close

Presentations from the meeting:

The HIV journey from paediatric to adult services – Dr Tomas Campbell

Epidemiology of perinatal HIV in the UK/Ireland – Dr Ali Judd

Growing up with HIV – the paediatric legacy for adult services – part 1/2 – Dr Caroline Foster

Growing up with HIV – the paediatric legacy for adult services – part 2/2 – Dr Caroline Foster

 

About the speakers:

Dr Tomás Campbell is a Consultant Clinical psychologist in Newham, London. He has developed psychosocial interventions for children and families with HIV including transition interventions and parenting courses for HIV+ parents to enhance coping. He has a special interest in the link between stigma, physical health and coping. He is an international board member of the only dedicated adolescent HIV clinic in KwaZuluNatal, South Africa and he is a member of the Children’s HIV Association Africa teaching team that aims to provide skills and confidence to South African clinicians and HIV workers both within the health and NGO sectors to address adolescent issues.

Sandra Johnson – is an HIV positive peer youth case worker at Positively UK who supports young people living with HIV in the UK aged 16-25. She empowers young people in support groups with her story of being born with HIV, accessing the right services and enabling them to gain further knowledge on HIV and treatments. She couldn’t ask for a better career path and firing passion than being able to help mould and change the lives of young people living with HIV.

Ali Judd is a senior epidemiologist at the Medical Research Council Clinical Trials Unit.  She coordinates the Collaborative HIV Paediatric Study (CHIPS), which is a follow-up study of all children living with HIV in the UK and Ireland.  She also leads the Adolescents and Adults Living with Perinatal HIV (AALPHI) cohort, which is a new study recruiting young people with perinatal HIV and following them for 5 years.  She co-coordinates the European Pregnancy and Paediatric HIV Cohort Collaboration (EPPICC), and leads a working group within EuroCoord which is tasked with developing links between paediatric and adult cohorts across Europe to allow long-term follow-up of young people with perinatal HIV.

 Dr Caroline Foster – MRC/PENTA is a Consultant in Adolescent Infectious Diseases/HIV Transitional Care at Imperial College Healthcare NHS Trust. She is the current chair of HYPNET (HIV Young Persons Network www.hypnet.org.uk) and research interests include the long-term neurocognitive, cardiovascular and reproductive impact of perinatally acquired HIV infection and of antiretroviral therapy.

Background material

Videos – below are some selected short clips of videos to watch in preparation for the meeting. They are a mix of young people’s voices from different parts of the world and one medical webcast.  The webcast is rather slow and long but covers everything around transition, worth watching.

Transitioning Adolescents: Stories from Three EGPAF Ambassadors
http://www.youtube.com/watch?v=mFavHiN3PjI

The Poz Project – Young People living with HIV speak out for awareness and prevention. (Approx. 30 min.) They talk about: how they were infected with HIV; how they cope; stigma they have encountered; how HIV affects their relationships; and their thoughts about preventing HIV.
http://www.youtube.com/watch?v=AV1J_rCh27A

A 13-year-old girl from Honduras addresses AIDS conference in Mexico. The Honduran teenager has been speaking publicly about her HIV status for years in an effort to reduce HIV stigma and discrimination (approx 54 seconds).
http://www.youtube.com/watch?v=MEL-hXX-ICA&list=PLE073F68F3B669BF5

Ethiopia Selah Twietmeyer, a teenager adopted from Ethiopia gives her testimony and talks about what it was like to be saved from near death. (approx 9 mins)
http://www.youtube.com/watch?v=mk1TZSFvZZI

Two teens who were born with HIV/AIDS talk about what it’s like to stay optimistic, even in the face of an unknown life expectancy. (approx 3mins)

CHIVA video: Ben’s story  – talking about safe sex (approx 2.5mins)
http://www.chiva.org.uk/youth/worldwide/index.html

Hydeia Broadbent talks about growing up with HIV/AIDS (approx 6mins)
http://www.youtube.com/watch?v=Qo-2fhuyDlw

Webcast: Transitional Care for HIV and AIDS: From Adolescence to Adulthood (58 mins)
Dr Jeffrey Birnhbaum gives an overview about the transition process and ways to ensure that HIV-positive adolescents are successfully and seamlessly integrated into adult care settings.
http://blip.tv/public-health-live/transitional-care-for-hiv-and-aids-from-adolescence-to-adulthood-5661004

Documents:

CHIVA Guidance on Transition for adolescents living with HIV
http://www.chiva.org.uk/files/guidelines/transition.pdf

Health outcomes for young adults with perinatally acquired HIV infection following transfer to adult services
http://i-base.info/htb/15034

Tenofovir use in children
http://i-base.info/htb/21193

The HIV Experience: Youth Identified Barriers for Transitioning from Pediatric to Adult Care
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3042597/?report=classic

PENTA clinical trials website:
http://www.pentatrials.org/trials.htm

US guidelines on transition for adolescents
http://www.hivguidelines.org/clinical-guidelines/adolescents/transitioning-hiv-infected-adolescents-into-adult-care/

Financial support

The UK-CAB receives unrestricted funding from some pharmaceutical companies towards the direct costs of holding four meetings each year. This funding supports the travel and accommodation costs for members to attend from outside London, plus the cost of catering.

The content, programme and agenda for meetings is decided by the UK-CAB steering group in consultation with the wider membership. Funding is unconnected to meeting content.

We believe that manufacturers who currently develop and market medicines have a responsibility to actively engage with advocacy organisations and that HIV positive people and their advocates should be able to directly question manufacturers about the safety and efficacy of their products and proposals for future research.

For a list of companies that support the UK-CAB please see the “about us” page.

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Published: July 18, 2013
Last edited: May 7, 2014