Presentation on theme: "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."— Presentation transcript:
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 well- understood 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 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 NB denominator is sites who had or expected transitioning patients.
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.