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Adolescent transition to adult HIV care.

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Adolescent transition to adult hiv care l.jpg

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.

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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.

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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.

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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.

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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.

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Level of experience of transition

NB denominator is sites who had or expected transitioning patients.

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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)

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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.

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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.

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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).

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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)

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Health promotion topics for transition patients

NB: Totals vary because sites unsure or not answering are omitted. Base is sites who had or expected to receive transitioning patients.

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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).

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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.

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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.