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Don’t Forget the Children Untested children of mothers with HIV. Wendy Majewska Courtyard Clinic St George’s NHS Trust . ‘Don’t Forget the Children’. MISSION STATEMENT The HIV status of all the children of known HIV-positive adults in the UK should be known as a matter of clinical urgency

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Don’t Forget the Children Untested children of mothers with HIV


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don t forget the children untested children of mothers with hiv

Don’t Forget the ChildrenUntested children of mothers with HIV

Wendy Majewska

Courtyard Clinic

St George’s NHS Trust

don t forget the children
‘Don’t Forget the Children’

MISSION STATEMENT

The HIV status of all the children of known

HIV-positive adults in the UK should be known as a matter of clinical urgency

BHIVA/CHIVA/BASHH consensus 2009

current situation
Current situation
  • Undiagnosed HIV is a well-recognised problem in the UK among adults and is associated with late presentation and increased morbidity and mortality. It is less well understood in children

BHIVA/CHIVA/BASHH consensus 2009

current situation4
Current situation
  • The children of HIV-positive adults attending HIV services are a readily accessible group of children at risk of HIV infection.

BHIVA/CHIVA/BASHH consensus 2009

current situation5
Current situation
  • There is a current lack of robust protocols in place to ensure that children at risk of HIV infection are identified and tested.

BHIVA/CHIVA/BASHH consensus 2009

current situation6
Current situation
  • Undiagnosed HIV infection in children is a significant cause of potentially avoidable morbidity and mortality.

BHIVA/CHIVA/BASHH consensus 2009

current situation7
Current situation
  • Children of HIV-positive parents in the UK who were born abroad are those most at risk of undiagnosed paediatric HIV infection as they are less likely to have had antenatal HIV testing and treatment.

BHIVA/CHIVA/BASHH consensus 2009

current situation8
Current situation
  • HIV testing of children is clearly in the medical interests of the child and, in the majority of cases, testing the children of HIV-positive parents is straightforward. However, if the parents consistently refuse, thereby putting the child at risk of having undiagnosed HIV infection, it may become a child-protection issue and need to involve the courts.

BHIVA/CHIVA/BASHH consensus 2009

testing children of adults attending hiv clinics
Testing children of adults attending HIV Clinics

Specific issues with testing children

disclosure of parents HIV status

safeguarding children when parents refuse disclosure

guilt/stigma

Little data on number of untested children in UK

audit jan june 2009
Audit Jan – June 2009
  • Aim
    • Identify number of women attending Courtyard Clinic during this period
    • Identify how many of these women had children
    • How many of these children had been tested for HIV
methods
Methods

Case notes review of women attending HIV services at Courtyard Clinic from January to June 2009

Information gathered from HIV case notes, obstetric and paediatric records and face to face consultations

Collected on central database

results
Results

461 women attended January to June 2009

461/461 (100%) case notes reviewed

364/461 (79%) had children

364 mothers had 828 children

results13
Results
  • 516/828 (62%) had been tested for HIV
    • 455/516 (88%) had been tested HIV negative
    • 61/516 (12%) had been tested HIV positive
  • 663/838 (80%) lived in the UK
    • 481/663 (75%) had been tested for HIV
  • 165/828 (20%) lived outside of the UK
    • 35/165 (20%) had been tested for HIV
untested children 18 years
Untested Children ≤ 18 years

61/312 (16%) untested children were aged ≤18 years

61 children were born to 43 mothers

24/61 (40%) of these lived in the UK

ethnicity of mothers
Ethnicity of mothers

All mothers (364)

Mothers (43) with untested children aged ≤ 18 years

reason for not testing child 18
Reason for not testing child ≤ 18
  • Child not perceived to be at risk by mother
  • Lost contact
  • Child declined to be tested
  • Unknown
conclusion
Conclusion

24/828 (3%) untested children aged ≤ 18 years live in the UK

Urgent and on-going work needs to continue

Priority needs to be given to working with parents to facilitate testing

recommendations summary
Recommendations (summary)
  • Protocols and procedures must be in place to ensure all children of HIV-positive parents are tested
  • A multi-sector, multidisciplinary team needs to be identified and be responsible for setting up protocols and managing cases if and when they arise
  • Pathways need to be developed

BHIVA/CHIVA/BASHH consensus 2009

recommendations summary20
Recommendations (summary)
  • All HIV units will need to perform a ‘look back’ exercise to establish the HIV status of any children whose HIV-positive parents attend that service
  • All new HIV-positive patients attending adult HIV services should have any children identified, tested and the information clearly documented

BHIVA/CHIVA/BASHH consensus 2009

recommendations summary21
Recommendations (summary)
  • Joint protocols should be in place between health and social care
  • All healthcare professionals have a duty to ensure the safety of children and ensure safeguarding issues are addressed
  • Follow-up support should be provided for all children and parents to help with disclosure or adjustment issues

BHIVA/CHIVA/BASHH consensus 2009

thank you
Thank You

All staff involved in this project in particular Katia Prime, Rosemary Handyside, Shalini Andrews, Helen Webb, Simone Ghosh and the multi-disciplinary team at St George’s NHS Healthcare Trust.