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.