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.

2009 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.

0

500

1,000

1,500

2,000

2,500

2000 2001 2002 2003 2004 2005 2006 2007 2008 2009

Vertically acquired infection All young adults aged 16-24

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.

0%

10%

20%

30%

40%

50%

0 1-3 3-10 10+

Number of transitioning patients seen so far

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 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)

Health promotion topics for transition patients

Number of sites covering:

Always Sometimes Not covered

Routine contraception 73 4 11

Emergency contraception 70 6 13

STIs 79 5 8

HIV prevention 81 4 7

PEPSE 78 5 9

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.