Adolescent transition to 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.

BHIVA Audit Programme Annual rolling audit programme for BHIVA sites: providers of adult care audit of management of hepatitis B/C co-infection. Accompanying survey of management of paediatric aspects of adult care:  Testing children of adult patients  Transitional care for adolescents with HIV.

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

Relevant guidelines/recommendations “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.

Experience of transition  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 NB denominator is sites who had or expected transitioning patients.

Developing policies and processes Of 134 sites who had or expected to receive transitioning patients, 64 answered about how transition arrangements had been planned. Groups involved were:  Paediatric care team (60 sites)  Adult care team (57)  Patient/community representatives (27), of which: Young people with HIV (16) Parents (13) Patient support group(s) (10) Other community-based organisation(s) (10)  Commissioners (7)

Liaison arrangements  49 (34.3%) sites said there was a multidisciplinary group to oversee transition  75 (52.4%) no MDG, 19 (13.3%) unsure or no answer. Of 134 sites with/expecting transitioning patients:  48 (35.8%) said there was MDG and 41 took part  46 (34.3%) had named professional responsible for transition  15 (11.2%) planned to appoint  61 (45.5%) no plan to appoint and 12 (8.9%) unsure.

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  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)

Health promotion topics for transition patients Number of sites covering: AlwaysSometimesNot covered Routine contraception73411 Emergency contraception70613 STIs7958 HIV prevention8147 PEPSE7859 NB: Totals vary because sites unsure or not answering are omitted. Base is sites who had or expected to receive transitioning patients.

Governance and evaluation  20 sites said financial/clinical governance implications of transition had been addressed, 40 that they had not. Most unsure or no answer.  3 sites had evaluated transition arrangements and 13 planned to do so.  Evaluations had involved paediatric and adult services (all 3 sites), young people (2), support group(s) and other community organisations (1).

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.

Conclusion and recommendations Adult HIV services have varying, but mostly limited, experience of young people transitioning from paediatric care, and use a range of approaches. Adult 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.