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South Thames Paediatric HIV Seminar
Held St George's Hospital, London
29.10.97
[Notes taken and webplaced by Ian
Hodgson on 18th May 1998]
Medical and Treatment Issues
1. Management of Opportunistic Infections and Organ Disease – consultant,
SGH
Rapid turnover – many virons produced and many CD4 cells destroyed per day
Global picture:
- 30-40m cases of HIV
- 3m women and 3m children have already died
- 5m children are ‘AIDS orphans’, and therefore at risk of death
UK picture:
- 1997 – 250 children alive with HIV
- Most in Thames regions
- Changes in immigration policy, and increase in ante-natal treatment have reduced
incidences of childhood HIV in UK
- New arrivals, or those born and not yet diagnosed will appear over next 5 years
- Prevalence of HIV among pregnant women is mostly confined to Inner London
(eg. Wandsworth)
Clinical problems - HIV can damage any organ:
- General problems: cardiac and renal disease; occular, skin, peripheral neuropathy,
muscular and joint problems
- Encephalitis will be a serious problem in the future, as in the USA now, manifested in
ataxia, spastisity, spastic cerebral palsy, ++cerebral atrophy, cognitive failure, as well
as behavioural problems
- Hemiplegia (caused by toxoplasmosis)
Organ based disease
- As children live longer, they will develop more ‘adult’ organ disease
- Epstein-Barr driven lymphomas commonest in children
- KS is rare, though does respond to treatment if virus driven
- CMV significant problem in children less than 2 years old, and will continue presenting
– treated with gancyclovir implants in the eye at St George’s in a 2 year
old – youngest in the world
- Failure to thrive – should keep as close to normal centiles as possible
Other problems:
- PCP – originally survival time from diagnosis was 1 month, though this is improving
if treated early with: ITU; surfactant; steroids – NB all children born to HIV+ve
mothers should be given prophylactic septrin until serostatus confirmed (at least 6
months)
- London ‘cohort’ tends to be sicker than European equivalents – maybe due
to: genetic; links with Africa
- Chicken pox – if CD4 count high then allowed to ‘catch’ it – but if
AIDS defining, then given ZIG
- Herpes virus – causes many problems (CMV; HS etc)
2. Anti-retroviral therapy (ART) – Consultant – St Mary’s
Hospital
Global challenge of ART is to reduce vertical transmission
A key problem is the hyper activity of HIV and the production of billions of virons
each day, constantly coming into contact with CD4 cells
After initial infection, the immune system can control HIV, and in some individuals the
virus is reduced to undetectable levels – this can be predictive of survival.
Viral ‘set point’ (resting state during asymptomatic period) is >100,000
copies/ml
In children, the virus remains at high levels for the first 2 years (therefore higher
viral load than adults), though this does reduce with time
Problem is the overlap between rapid and non-rapid disease progression – no valid
‘cut off’ for beginning treatment, except children with <50,000 copies/ml do
not have rapid progression
Distribution of HIV 1 subtypes – there are many divergent strains, and the UK type
is tested by assay, but different assays are required for each given population.
As well as assay, CD4 count can be used to monitor activity of HIV:
CD4 of 325 – risk of eg. TB
CD4 of 180 – eg. PCP
CD4 of 100 – eg. toxoplasmosis
CD4 of 50 – eg. CMV
Counts in children tend to be higher in the presence of disease – at CD4 of 1000 a
child can have PCP
Aspects of treatment:
Basic virology – viral RNA converts to host DNA using the enzyme reverse
transcriptase – uses the host cells own machinery, like a cuckoo
Combination therapy is the way of the future (though protease inhibitors have yet to be
introduced as standard treatment in children)
+ve effects of CT – synergistic effects; delay of resistance; less toxic levels
cab be used
-ve effects of CT – new toxicities; pharmacological reactions; issues of
compliance
- Nucleoside analogues – include: AZT; DDC; DDI (anti-reverse
transcriptase)
- Non-nucleoside analogues – include: nevirapine;
- Protease inhibitors – include: ritanovir; indinavir – rarely used in children
(very large tablets) (anti-protease enzyme – HIV cannot gain access to material for
replication)
Treatment in other countries:
USA – aggressive treatment given at point of infection – extends survival
time, and also reduces perinatal infection (though this could be due to early screening)
France – AIDS defining events reduced with early treatment
Conclusion:
When to start treatment ? – HIV infection can be confirmed at 3-4 weeks, and
treatment started at 2 months can significantly reduce viral load. There is some
‘bounce back’ – maybe due to non-compliance, but the recommendation in
children is to begin treatment once diagnosis is confirmed.
3. Delays on Diagnosis of Paediatric HIV Infection –
Paediatrician, SGH
Description of study to identify reasons for late diagnosis in St George’s
Hospital.
Study population – 50 children – 48 infected vertically; 44 from Sub-Saharan
Africa; 11 died during study
Results – reasons for late diagnosis:
- Poor ante-natal detection of HIV status of mother
- Late recognition of infected children following delivery
Issues:
- When to test; gaining consent for testing
- Benefits of post-natal testing include: PCP prophylaxis; treatment and prevention of
other infections; growth and deveopment can be monitored; education and support can be
given
- Only a few mothers found to be HIV+ve during pregnancy thought themselves to be at risk
Care issues
1. Case presentations
HIV is a family illness; many individuals are refugees from countries such as Uganda,
may have hastily departed from their home country; have no profession or links to the
social services
Problems accessing services:
- Suspicion of services
- Uncertainty around HIV testing
- Confidentiality
- Problems facing the ‘medical culture’
- Past experience of HIV
- Suspicion of treatment
- Message of the church: divine healing
- Communication difficulties
Way forward:
- Involve all communities
- Work with the Afican communities
- Unification of African groups – this is problemmatic due to the existence of
different tribal groups
- Hospital services should be more culturally aware
2. Talking to children – Paediatric Clinical Psychologist
There are currently more affected children than infected children –
both groups need support.
Changes 1990-1997
- Children with the virus are now older
- Treatment is more complex
- HIV is now a more chronic disease – ‘living with HIV’ now underlying
principle
- Affected children’s needs are now recognised
- Discrimination and stigma are more covert
- HIV education is moving towards how the virus cannot be transmitted
- Media is generally less sensational
Coping in families
- There is a new emphasis on coping, and not labelling families
- In supporting the family: it is recognised that HIV is chronic; help should be given in
coping with complex treatments
Issues
- HIV awareness – how to get the message across
- Sexual abuse
- Disclosure and understanding for the children involved
Disclosure
- Study at SGH – 30-40% parents told relatives
- 9% told the school
Main principles
- honesty
- identify what child already knows
- children show distress in different ways
- partnership with parents
- identify who the child can talk to about HIV
- children are coping with losses
Cultural Aspects – the African (Ugandan) Perspectives
1. African View of Bereavement and Loss – Croyden Healthcare Promotion
- Any event is seen as the responsibility of the extended family.
- If there is a death, the family congregate and ensure correct cultural rituals are
followed.
- Family needs to know the cause of death – blame for HIV on evil influences –
more recently HIV seen as less shameful illness – very few Ugandans in UK have not
been affected by HIV.
When a child dies, HIV not openly cited as cause – death attributed to ‘the
illness’.
Burial – problems to bury at home (Uganda) because of refugee status, especially
if the partner/other children…
Many families opt for child to go home, even if the family cannot attend. Also,
dilemmas of child burial in UK- parents want to be buried in Uganda.
Issues surrounding death of child
- are the parents married – is the relationship monogamous ?
- do either of the parents have HIV ?
- are there other children ?
Issues for the women in Uganda
- most important factor is marriage and motherhood, and HIV will jeopardise this
- taking AZT in pregnancy is problematic
- if the wife cannot have children, she may have to return home to her parents – a
Bad Thing
- during time of mourning, the mother has to look grieved (in the way she sits, in the way
her hair is styled)
- majority of Ugandans live in rural areas – mothers often bringing up children alone
2. Perspective of HIV+ve parent (mother)
In Uganda – sex education is via the paternal Aunt, and not necessarily the parent
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