1. Adolescence & HIV – aiming for a successful transition to adult services Dr Conor Doherty RHSC Glasgow

2. Talking to adolescents Clinician parent child Parent Clinician Older child ClinicianAdolescent Confidentiality, honesty, clarity Listen, engage, respect Non judgemental Encourage to ask questions Don’t overload, patronise and don’t assume poor understanding

3. ‘The agenda’ Clinician - the optimal regimen - minimise s.e.’s & maximise adherence Adolescent - family dynamics - sex, drugs & alcohol - risk taking behaviour - peer group conformity What does my diagnosis mean to me? - isolation - race, ethnicity - language - migration - parental illness / bereavement - transition to ‘adult care’ - education & future plans

4. The transition – ‘a guided educational & therapeutic process’ Epidemiology – identifying the clinical issues Cases – challenges, successes, failures Service provision and guidance CHIVA www.chiva.org.uk CHIPS www.chipscohort.ac.uk HYPNET www.hypnet.org.uk

5. ↑ survival ↓ vertical transmission ↓threshold for HAART ↑ no of adolescents ↑ age of perinatally infected cohort ↑ duration of drug exposure

6. Epidemiology (HYPNET/CHIVA) 2228 young people (16-24) accessing HIV care in UK (2007) - 48% heterosexual – mainly black African - 48% MSM (x2 since 1998) 654 perinatally infected> 10 y old (up to 2007) - 93% of those diagnosed with HIV <16y old are in CHIPs cohort Globally - 40% of 2.8 million new infections in 2008 in the 16-24 y old age grp (UNAIDS) -HIV prevalence in 10 y in S Africa to increase from 2.1% to 3.3% by 2020 (Ferrand 2009) - 38% of children requiring HAART had access to treatment in 2008 (UNAIDS)

7. In clinic - the issues Communication / education / empowerment Medication - adherence within a teenage lifestyle - simplification of regimens - long term health & minimising complications due to HAART Identifying the stresses Alcohol, drugs and sex future plans and transition of care

8. Newly presenting adolescent Judd et al: HIV medicine 2009 42 presented >13 y old (median 14 y (13-20y)) 95% Black African and 86% born in Africa 50% symptomatic (29% AIDS at diagnosis) & 47% as a result of screening Median CD4 210/μl(0-689)

9. Case 1 : age 17y 14 y old – newly arrived from sub-Saharan Africa Presented to adolescent services for screening Mother reluctant to screen and reluctant to disclose result Disclosure 5 months after presentation and just prior to starting HAART – relationship with mother deteriorated CD count 235 – declined treatment Regimen commenced 1 year after diagnosis Totally virally suppressed for 1 year/CD4 590 The stresses - relationship with mum & honesty around diagnosis - ? Imminent forced repatriation & all the other teenager stresses Current situation - refusal to attend clinic - taking HAART - ad hoc clinical care - refusing peer support - monosyllabic and angry ?? How to plan transition

10. Gillick competency/Fraser guidelines ‘parental right to determine whether their…child below the age of 16 will have medical treatment terminates if and when the child achieves a sufficient understanding and intelligence to enable him or her to understand fully what is proposed’ Lord Scarman – House of Lords judement Gillick v West Norfolk and Wisbech Area Health Authority (1985) Is child competent to make own decisions & understand the implications of those decisions?

11. Case 2: 12 y old Diagnosed aged 5/12 with PCP Mother : 22y, single, little family support, just started HAART herself, alcohol and mental health concerns, poor clinic attendance, poor parenting skills

12. Treatment changes Viral Load CD4

13. Treatment ( ), interruption( ) and directly observed therapy ( ) Viral Load CD4

14. Peer support NCB guidance http://www.ncb.org.uk/pdf/HIV%20Handbo ok%20lo%20res.pdf http://www.ncb.org.uk/pdf/HIV%20Handbo ok%20lo%20res.pdf http://www.chiva.org.uk/youth http://waverleycare.org

15. Teenagers and risk taking!! >25% of teenagers are sexually active before 16y old The younger the adolescent the less likely to use a condom UK – highest rate of teenage pregnancy in Western Europe 50% of all STI’s occur in the 16-24 y old 4% of 11 year olds said they had used drugs in the last year, compared with 29% of 15 year olds in 2008 (www.ic.nhs.uk ) Drinking increases with age: 14% of 12–13s, 33% of 14–15s and 62% of 16–17s have drunk alcohol in the last week (ias.org.uk )

16. Treatment guidance : PENTA 2009 ClinicalCDC stage B or C WHO stage 3 or 4 CD4<350 cells / μl Virological>100,000 copies / ml Response to treatment (both naive & experienced) poorer than in young children or adults (COHERE 2008) <40kg>40kg Efavirenz & lamivudine & abacavir Efavirenz & Truvada/Kivexa or Kaletra & lamivudine & abacavir Kaletra & Truvada/Kivexa

17. Case 3 : drug exposure 17 y old presented aged 10y with suppurative lymphadenitis Mother dead - father, step mother & step siblings HIV-ve May 2003VL 18000 CD4 251 (18%) ddI/d4T/NVP Dec 2003VL 14800 CD4 196 (12%) June 2004VL 31400AZT/3TC/ABC/EFVL74V, K103N,Y181C July 2004AZT/3TC/LPV/r Dec 2004VL 21500 CD4 181 (10%) ABC/AZT/3TC/LPV/rM184V, K219N,K103N Y181C June 2005VL32900 CD4 150 (9%) Treatment interruptionM184V, K103N Apr 2006CD4 10 (1%) VL 21000 TDF/3TC/LPV/r & T20 July 2006CD4 74 (4%) VL<50 as above Dec 2006CD4 170 (8%) VL<50 as above Mar 2008CD4 364 VL<40 Kaletra Truvada July 2010CD4 527 VL<40 Kaletra Truvada

18. Long term morbidity Neurocognitive - Children (3-7y) with CDC Class C ↓ neurocognitive development (Smilth 2006) - Adolescents with CDC Class C ↑ prev of neurocognitive & psychiatric morbidity (Wood 2009) - School age children - normal IQ but ↓ executive functioning and processing speed (Koekkoek 2008) * caveat – complex aetiology of neurocognitive dysfunction and adequate control of cofounders ? functional translation of neurocognitive deficits Psychiatric ↑ prev of morbidity in HIV positive adolescents (Mellins 2009)

19. Long term morbidity Cardiovascular - interplay of host, viral and ART factor often not evident in adolescence. - hypercholesterolaemia, hypertriglyceridaemia & insulin resistance (Hazra 2010) - lipoatrophy/dystrophy & body image - ↑ arterial wall stiffness (carotid PWV) (Charakida 2009) - DAD/SMART studies in adults linking recent ABC to MI’s Renal - pre HAART 10-15% of African American children had HIVAN - 22% of children had persistent laboratory renal abnm assoc with Black ethnicity, older age, tenofovir (Andiman 2009) - CHIPS cohort : Hypophosphataemia uncommon (4%), prolonged TDF use, generally reversible with TDF withdrawal (Judd 2010)

20. How well are we doing?

21. UK experience - the CHIPS data (Foster at al: AIDS patient care & STDs 2009) 654 perinatally infected> 10 y old (up to 2007) 79% Black African (57% born abroad) Median age/durationUK/Eire1 / 11y Abroad8 / 5y 25% AIDS defining illness 10 deaths during adolescence Treatment – at last follow-up 64% on ART (78% <400 copies / median CD4 554) 18% off (previously received ART) 18% ART naïve 47% triple class experienced 166 with resistance genotypes: 52 / 12 % had dual/triple class mutations 12% severely immunocompromised (CD4 < 200) 103 (16%) transferred to adult services at median age of 17y ? toxicity data ? growth/puberty/fertility/neurological/neurocognitive outcomes

22. National Networking CHIVA / HYPNET http://www.chiva.org.uk/health/guidelines/standards#Standards MDT should include support from: paediatricians; specialist nurses, pharmacists, psychologists, physiotherapists, social workers, and dieticians Evidence based practice Planned transition & individualized plans Health education and promotion inc negotiating relationships, safe sex education and vaccination Comprehensive paediatric summary The views of adolescents and young adults should be represented in policy and ongoing service developments http://www.chiva.org.uk/publications/2007/transition.pdf http://www.chiva.org.uk/health/guidelines/independence HYPNET HYPNet CHIVA guidance on the management of sexual and reproductive health for adolescents living with HIV 2010

23. Glasgow Adolescent clinic Based at RHSC After school From age 11 onwards (after disclosure) Review without parent Review with adult consultant (GUM) Separate consultation with sexual health advisor Encourage adolescent to take responsibility to understand & enable reasoned decisions to successfully transition to adult care

24. Conclusions ‘transition’ - planned, purposeful and patient – centred - medical, psychological Adolescents have specific service requirements & need dedicated service models Long term morbidity of HIV/HAART Current lack of well controlled research studies