UK Community Advisory Board (UK-CAB)

UK-CAB 27 – Transition from paediatric care to adult services

24 October 2008

Background reading

HTB supplement XVII International AIDS Conference Mexico City August 2008
Guidance on transition and long term follow up services for adolescents with HIV infection acquired in infancy
Bridging the Gaps: Health Care for Adolescents
Adolescent Transition Care
Transition of care for adolescent to adult services
Transition of Adolescents with Special Health Care Needs
Living With HIV: How Children Are Making The Successful Transition Into Adulthood


09.45 – 10.00 Welcome and announcements and new look bulletin board – Matthew Williams
10.00 – 10.30 London Commissioners Drug Group and the Oversight Committee/D:A:D research – Simon Collins
10.30 – 11.00 Mexico Feedback: Social issues – Paul Clift
11.30 – 11.45 Break
11.45 – 11.55 BHIVA Education Scientific Committee feedback – Elijah Amooti
11.55 – 12.15 BHIVHA/CHIVHA feedback – Matt Williams
12.15 – 12.35 Update on the HCQ and PIVOT trials + any advance news of other research – Nick Parton
12.35 – 13.00 Q & A for all feedback sessions
13.00 – 14.00 Lunch
14.00 – 14.45 Transitional Care from paediatric to adult Services: A clinical care perspective – Susan McDonald, CNS 900 Clinic, St Mary’s Hospital London
14.45 – 15.00 Break
15.00 – 15.45 Young People and HIV: A social support perspective Maria Phelan, Children and Young People HIV Network Coordinator, NCB
15.45 – 16.00 UK CAB business
16.00 Close

Background reading

HTB supplement XVII International AIDS Conference Mexico City August 2008

i-Base report: 10 key areas of research: non-technical summary of studies and presentations from Mexico

This supplement is a non-technical overview of some of the most interesting studies presented at the International AIDS Conference held in Mexico City from 3-8 August 2008

Guidance on transition and long term follow up services for adolescents with HIV infection acquired in infancy

(National Service Framework – Key issues for Primary Care 2004) [174 Kb]

Bridging the Gaps: Health Care for Adolescents

Council Report CR114, June 2003, Royal College of Paediatrics and Child Health.
Sue Bailey, Chair, Faculty of Child and Adolescent Psychiatry

Bridging the Gaps: Health Care for Adolescents arose out of an Intercollegiate Working Party on Adolescent Health, ledby the Royal College of Paediatrics and Child Health, togetherwith seven other colleagues including the Royal College ofPsychiatrists. This report cogently argues the case for a clearfocus by government, policy makers, practitioners and NHS Serviceson adolescent health care. It offers an overview of the healthcare of adolescents in the UK at the start of the 21st century andpoints to the many current health (including mental health)needs of this important age band, who are in transition andmake up 13-15% of the population in developed countries.

Covering the size and nature of young people’s major healthneeds, service development and the concept of adolescent healthcareas a speciality, there follows a series of important recommendationsfor promoting better health across primary care, school healthservices and young people in special circumstances. The reportgoes on to cover secondary care in accident and emergency situations,out-patient care and transition, and in-patient healthcare.

In the context of major developments in services for childrenand adolescents, this report recognises very clearly the rightsof young people who are making the transition to adult autonomy.

The task set to us all is large, but the recognition of theneeds of this group, the importance of their views and theirperspective on what services they need, together with recommendationsfor training that stress the imperative of a developmentalunderstanding of adolescence, are very much to be welcomed.Communicating with and listening to adolescents are key to this report. A valuable read, and no doubt with the current paceand nature of change within the NHS and Society, it is a CouncilReport we will be revisiting sooner rather than later, witheven more emphasis on the importance of mental health and emotionalwell-being.

Original article can be found at

Adolescent Transition Care

Guidance for Nursing staff (Royal College of Nursing) [1.9 MB]

Transition of care for adolescent to adult services

(CHIVA document 2005)
The majority of HIV infected children who attend our clinic are vertically infected and are considered as children living with a chronic condition. This protocol describes the family clinic’s plans to prepare for and manage the process of transition from paediatric to adult care in this population. This process of preparation begins in middle childhood and progresses through adolescence at a speed appropriate for each child and their family.

We have described below the important phases of this process which the child and family will need to work through for transition to adult care to successfully occur.

Transition of Adolescents with Special Health Care Needs

Review and Analysis of the Literature – Issues in Comprehensive Paediatric Nursing, Vol.27, Issue 3, July 2004.

A review and analysis of 43 transition studies published from 1982 through 2003 was conducted. The studies reviewed represent the diverse purposes of international researchers for examining transition issues and questions. Findings of this literature review indicate that transition research is in early stages of development. A number of limitations were associated with these studies, including the lack of theoretical frameworks, the use of valid and reliable instruments, and research designs lacking adequate controls. Future research studies are needed that overcome the design limitations of past investigations. **

** this is an abstract, full document is available for purchase

Living With HIV: How Children Are Making The Successful Transition Into Adulthood

Susan Mcdonald, Clinical Nurse Specialist from 900 clinic, St Mary’s Hospital London.

Most of what we read and hear about HIV and AIDS is bad. It is a bleak landscape where good news is generally hard to find.

Let alone what is happening in sub-Saharan Africa and other parts of the world under siege from this virus, the UK too is grappling with increasing health challenges from the HIV/AIDS epidemic.

The National AIDS Trust says the UK will have 100,000 people living with HIV by 2010 and failure of investment in HIV prevention and education is putting thousands at risk.

But, tough as it is to contract HIV as an adult, how much thought is given to those who have the virus at birth? As a child living with HIV in Britain today, how do you face the challenge and stigma of being HIV positive through no fault or direct action of your own? And how do you move forward into adulthood carrying such a responsibility?

In the heart of London, there is a very special clinic which is helping HIV positive adolescents from all over the country move through this journey from childhood to adulthood. The clinic, at St Mary’s Hospital in Paddington, is simply known as the ‘900’. Its central focus is to manage the successful passage of HIV positive kids from childhood to adulthood through multidisciplinary care.

Children are typically expected to move from paediatric to adult health services between the ages of 16 and 18. This is traditionally acknowledged amongst health professionals as a complex time to turn children over to adult care, especially for those with chronic diseases such as cystic fibrosis, diabetes and heart problems, which used to have high mortality rates in childhood. For kids who are HIV positive, the 900 aims to make this transition as seamless and successful as possible, and it is a UK first in shaping a new approach to the treatment and management of HIV.

“There is widespread recognition that the transfer from paediatric to adult services has been very poorly managed in the past. Often when this transfer has occurred, the level of care has deteriorated. Now there is increasing evidence that shows a proper transition process with shared paediatric and adult appointments can really help,” says Caroline Foster, a paediatrician specialising in adolescent HIV, who helps manage the 900 clinic.

St Mary’s, part of the Imperial College Healthcare NHS Trust, runs the largest paediatric clinic for kids born with HIV in the UK. It currently treats around 250 children, many of whom come to the clinic from considerable distances with shared care established with district general hospitals, allowing both the sharing of clinical care, expertise and education.

The total number of children known to be living with HIV in the UK and Ireland is estimated at around 1,400 but it is London which has the largest numbers. The average age in the paediatric clinic is 10, and there are now up to 50 young people who are aged 16 and above.

Now that virtually every pregnant woman takes up the routine antenatal HIV test, and if found to be infected can then take up interventions to prevent her baby becoming infected, and children with HIV are surviving thanks to combination antiretroviral therapy, the median age of children with HIV is going up, thus generating the increasing need for adolescent care and care as young adults, according to Foster.

“To fulfil their potential, these children now need both medical and psychosocial help. Thus, typical treatment will involve anti retroviral drugs to suppress the virus and also support with problems that tend to come in the teenage years, for example in relationships with friends and family members especially, as this is very much a family disease,” she says.

Problems for young people with HIV range from having to live with a chronic disease, adhering to medication which may cause side effects such as lipodystrophy which can be unsightly, as well as psychosocial issues such as the death or ill health of family members and the complex issues of negotiating relationships and your first sexual experiences with HIV. There is also the ever present issue of disclosure, as HIV remains a stigmatising disease, with at least one example of the bullying on Facebook of a young girl who chose to come out.

Whilst these problems cannot be underestimated, there is good news too and Foster is anxious to make the point. “Four of the young women in this clinic have now had their own babies who are HIV negative and this is great news, because teenagers need to adhere to their treatment to make this happen. I think now we can say that there is a wave of young people born with HIV who are surviving on treatment, transitioning, moving into adult services, getting through school to university and who are fully engaged in getting on with their lives.”

One cannot underestimate the issues that young people born with HIV and living in the UK have to deal with. But these issues are relative. In Africa, without treatment, half of kids born HIV positive will be dead by their third birthday.

Case Study: Grace’s Story

“Grace is 19 and came to live with her aunt in the UK from Zimbabwe in 1998 following the death of her parents. She was diagnosed with HIV aged 10 following an admission to hospital with pneumonia. Since that time she has been taking antiretroviral medication, although she stopped for a while in her teenage years. However, two years ago she became pregnant and this was a real motivation to take her medication to prevent the virus passing to her baby. She did extremely well and now has a healthy boy who is not infected with the virus.”
Imperial College Healthcare NHS Trust

Original article can be found at,

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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.

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