Transcript Slide 1
Paediatric aspects of adult HIV care
Audit & Standards Sub-Committee: M Johnson (chair),
M Backx, C Ball, G Brook, D Churchill, A De Ruiter, S
Ellis, A Freedman, L Garvey, P Gupta, K Foster, V
Harindra, C O’Mahony, E Monteiro, E Ong, K Orton, R
Pebody, F Post, C Sabin, A Schwenk, A Sullivan, R
Weston, E Wilkins, D Wilson, M Yeomans.
Presentation to cover
Findings of 2009 survey of management of paediatric
aspects of adult care:
Testing children of adult patients
Transitional care for adolescents with HIV.
Development of BHIVA audit protocol.
Background to survey
1884 vertically acquired HIV
cases in UK to June 2010
Most born abroad
Estimated 1230 diagnosed and
70-120 undiagnosed women gave
birth in 2007
Most untreated children ill by age
2
Some asymptomatic into
adulthood
Undiagnosed HIV less wellunderstood in children than adults
Guidelines: Test all children of adult patients, as an
accessible group at risk.
Background continued: young adults (16-24)
accessing HIV care in UK
2,500
2,000
1,500
1,000
500
0
2000
2001
2002
2003
2004
Vertically acquired infection
2005
2006
2007
2008
2009
All young adults aged 16-24
Data from HPA: SOPHID
Relevant guidelines/recommendations
“Don’t forget the children” 2009:
Adult HIV services must have protocols and procedures
for testing children
Identify, document and test children of all new adult HIV
patients
‘Look back’ to check HIV status of children of existing
adult HIV patients.
Relevant guidelines/recommendations, cont.
“Supporting Change: Successful Transition for Young People
who have grown up with HIV infection” 2007*:
Develop local transition policies and practices alongside
general principles
Named practitioners from paediatric and adult teams to
be responsible
Views of adolescents and young adults to be
represented
National multi-agency forum: Hypnet (HIV and Young
Person’s Network)
*Transitional care is also covered in CHIVA standards of care, 2010.
Aim, methods and participation
To describe adult HIV clinics’ policy and practice on:
Testing of children of adult patients
Adolescent transition.
Survey of adult HIV clinics/departments:
Conducted October-December 2009
Accompanied hepatitis B/C co-infection audit.
143 sites took part. 59 HIV centres, 71 outpatient HIV units,
13 neither.
Identifying children of new adult patients
New adult patients:
124 (86.7%) sites have standard procedure for newly
diagnosed adults
96 (67.1%) routinely ask for children’s names and DOB
(57 for adults of both sexes, 39 female only)
25 (17.5%) sites do not cover this
22 (15.4%) unsure or ask selectively.
“Look back” for existing adult patients
Existing adult patients:
61 (42.7%) sites had started or completed “look-back” to
document and test children
33 (23.1%) planned to do so
44 (30.8%) had no plans
5 (3.5%) were unsure.
Testing children of adult patients
92 (64.3%) sites aim to test all children under 18 of a
newly diagnosed HIV+ parent* regardless of age
39 (27.3%) assess risk before arranging testing
12 (8.4%) unsure or no consistent approach.
34 (23.8%) sites had reliable systems to check whether
children were tested
60 (42.0%) systems of doubtful reliability
45 (31.5%) no system
4 (2.8%) unsure.
*With unknown seroconversion date.
Auditing
32 (22.4%) sites had audited recording of patients’
children
31 (21.7%) had audited testing of such children.
Issues and sensitivities
101 (70.6%) sites had experienced patients refusing
testing of children
Often resolved through discussion but at least two child
protection cases
Close liaison with paediatric teams was valued.
Particular concerns about:
Testing adolescents and disclosure
Children not living with parent, especially those outside
the UK.
Transition from paediatric to adult care
63 (44.1%) sites had received young people with HIV
transitioning from paediatric care
71 (49.7%) expected to do so
5 (3.5%) expected transitioning patients to go elsewhere
4 (2.8%) were unsure.
Level of experience of transition
50%
40%
30%
20%
10%
0%
0
1-3
3-10
Number of transitioning patients seen so far
NB denominator is sites who had or expected transitioning patients.
10+
Age of transition
Only 5 sites had a policy defining age(s) for stages of
transition.
Several said ages vary but:
Most common age for first attending adolescent,
transition or adult clinic is 15-17
Most common age for discharge from paediatric care is
16-17, though often occurs over 18.
Models of care for transitioning patients
Approaches included:
Key workers (61 sites: 22 adult service, 9 paediatric, 21
double, 9 joint)
Multidisciplinary meetings re individual patients (48)
Family clinic (29)
Transition clinic staffed by adult + paediatric services
(13)
Adolescent clinic staffed by both services, but not
specifically for transition (7)
Patient-held health/life story summary (7).
Promoting retention in follow-up
5 sites had had transitioning patients who stopped attending,
and 39 who attended irregularly.
Support to prevent lapse and LTFU included:
Tracking and following up DNAs (77 sites, 19 dedicated
service for transition)
Named contact worker (65, 15 dedicated)
Community-based nurse visits (47, 7 dedicated)
“Contracts” with patients (6, 1 dedicated)
Issues raised in comments
Some respondents commented on need to develop transition
services. Others felt these worked well for small numbers of
patients.
Issues included:
Complex individual needs of this group
No national tariff/resources to develop services
Paediatric/adult liaison voluntary, unfunded
Lack of dedicated paediatric ID consultant
Need for central resource for professionals, young
people and families.
Conclusions
Testing children of HIV+ adults is sensitive. Most sites have
experienced parental refusal.
Recording children and checking whether they have been
tested also raises practical difficulties.
It is of concern that a third of sites do not routinely ask new
adult patients for children’s details.
Adult HIV services have varying experience of young people
transitioning from paediatric care, and use a range of
approaches.
Recommendations
All adult HIV services should audit recording and testing
of their patients’ children
Clinicians should adhere to national guidance if parents
refuse consent
Adult HIV services should plan for an increase in young
people transitioning from paediatric care
Develop transition care via local multidisciplinary liaison
with support from eg Hypnet and CHIVA.
Development of BHIVA audit protocol
BHIVA audit programme running since 2001
Rolling programme of topic based audits
Audit outcomes derived from BHIVA and other
guidelines, where available
Report national data and feedback to individual sites on
these outcomes
No comparison of site performance.
Development of BHIVA audit protocol, cont.
From 2011:
Pre-defined outcomes-based scoring system
Scores may reflect:
Audit/data quality issues
Case-mix
Quality of care
Clinician members of committee to contact low-scoring
sites to discuss results
If quality of care issues identified, to consider how BHIVA
can support improvement.
2010 audit: National testing guidelines
About to start data collection:
Survey of HIV testing policy and practice
Casenote review of patients seen for post-diagnosis
work-up:
Timeliness of referral into HIV-specialist setting
Circumstances of testing, pre-diagnosis disease and
possible missed opportunities for earlier test.