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.

2. 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.

3. 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 well- understood in children than adults Guidelines: Test all children of adult patients, as an accessible group at risk.

4. Background continued: young adults (16-24) accessing HIV care in UK Data from HPA: SOPHID

5. 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.

6. 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.

7. 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.

8. 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.

9. “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.

10. 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.

11. Auditing  32 (22.4%) sites had audited recording of patients’ children  31 (21.7%) had audited testing of such children.

12. 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.

13. 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.

14. Level of experience of transition NB denominator is sites who had or expected transitioning patients.

15. 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.

16. 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).

17. 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)

18. 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.

19. 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.

20. 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.

21. 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.

22. 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.

23. 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.