Key issues in a transitional care service

Transcription

1 Key issues in a transitional care service Dr Katia Prime St George s Hospital BHIVA 22nd April 2010 Definition of transition The purposeful, planned movement of adolescent and young adults with chronic physical and medical conditions from child-centred to adultoriented health care systems (American Society for Adolescent Medicine, 1993) 1

2 Overview Epidemiology Transition Setting up a service SGH clinics Issues Adolescents HCPs To cover in consultation Case history Epidemiology Collaborative HIV Paediatric study (CHIPS) Covers 93% of clinics seeing children diagnosed with HIV 16 years Most vertically infected 2

3 Leaving Paediatric Care 1,560 children/yp in current CHIPS follow up 61% of the cohort 10 years 258 (25%) are 14 years 212 have already been transferred to adult care since the start of CHIPS 55 (48%) stayed at the same adult centre Distribution of 14 years of age in CHIPS Total n= 258 3% Scotland 0% N. Ireland 9% Ireland <1% Wales 19% Rest of England 69% London 3

4 Setting up a service Input from teens & ongoing feedback Location of clinic & environment Staffing Timing Pharmacy Liason with other HCPs & agencies Support from other centres-hypnet* Communication within the team- MDT Follow up/dnas Research-PENTA, AALPHI, CHIPS (Adolescents & Adults living with Perinatal HIV) * Transition service at SGH Majority vertical transmission 95% Black African 50% boys, 50% girls 3 clinics PAC 13-18yrs, n=38, PYP 18-24yrs, n=27, Adult service, n=7 4

5 Service user consultation Established SGH adolescent clinics PAC 13-18yrs Yes June 2005, must be aware re diagnosis PYP 18-24yrs Yes March 2009, must have dx summary Location Adult GUM Adult GUM Staffing Paed Dr, GUM Dr, 2 paed HIV nurses, 1 adult HIV nurse, 1 HA, pharmacist GUM Consultant & SpR, 2 adult nurses, 1 HA, pharmacist, support worker Timing 1 st Wed, 4-7pm 2 nd Wed 4-7pm Attendance +/- parent/carer Alone Pharmacy DNAs In advance, via Paed team Phone, parents, home visit On the day, collected by YP Phone, letter, Community CNS Important issues for adolescents Continuity of care Adolescent friendly environment Flexibility of appointments Independence Texting Financial & employment issues School/college/university Sex & relationships Disclosure Stigma Parental loss 5

6 Sex & relationships I ve had the same doctor since I was a baby; he s like my parent. I can t talk to him about sex. I don t want to disappoint him Disclosure of HIV to adolescent I was on my way to bed and my mum said you ve got HIV I d caught a glance at my notes once but didn t want to say anything It doesn t matter when you re told or who tells you-it doesn t change the information. You ve still got HIV and you have to live with that 6

7 Disclosure to others Like the websites for best man speeches, I wish there could be one for how to tell people about HIV I have a boyfriend but I haven t told him. I love him and want to tell him but I m just too scared and I don t know how I m sick of all the secrets. Sometimes I just want to tell everyone and get it out in the open Stigma If someone s ill she says they ve got AIDS, they ve got AIDS! People don t know. We had a teacher who said you could get HIV from kissing In an RE lesson my teacher said that if he ever found out he was HIV he d shoot himself. I ve never been back to his lessons since 7

8 Medical issues Advanced HIV disease Neurocognitive delay Mental health Delayed puberty/growth Lipodystrophy ARV treatment experience Adherence Issues covered in consultation Contact details patient & other agenciesname/address/tel/ Medical-VL, CD4, general health ARVs-adherence, side effects, supply-pharmacy referral Mental health/psychological Social-finance, housing, education, career-support worker referral Emotional-disclosure, stigma, support, family, pnr Sexual & reproductive health-pnrs, STI screening, contraception, E/C, pregnancy, PEPSE-HA referral Education-reinforce topics Liason with other HCPs/agencies-permission, offer copies of letters 8

9 Case history Mary 19yrs, born in Kenya Diagnosed HIV+ve Oct 2005, aged 5yrs UK Severe failure to thrive, wt < 3 rd centile CD4 90, Dad reluctant to start ARVs Mum & 1 sibling also HIV +ve Dad physically & verbally abusive-on child protection register Problems AIDS Cerebral toxoplasmosis Dec 2005, Jan 2010 Recurrent oesophageal candidiasis Severe cognitive delay IQ 50 Dec 2005 Multidrug resistant HIV Poor adherence Pregnancy March 2009-blighted ovum UPSI with RMP-declines LARC Recurrent UTIs 9

10 ARVs Started Dec 1996, CD4 20 ddi/3tc d4t, ddc, Nelfinavir 2001 VL<100 Fosampren,ritonavir,nevirapine, tenofovir Tipranavir,rit,nev,tenofovir 2004 VL<100 Kaletra, trizivir 2006 Atazanavir, ritonavir, truvada 2007 Current problems Admission Jan 2010 headaches,vomitingrecurrence toxoplasmosis Poor adherence. CD4 94 (4%), VL Multidermatomal shingles Weight loss 20kg. 85kg 10/08, 65kg 04/10 2hr trip to SGH from home 10

11 Agencies involved in care SGH Community CNS Connexions worker Housing worker Support worker re benefits Social worker-discharged Learning disability team-not eligible GP-letters but no visits 11

12 Guidelines Guidance on transition and long term follow up services for adolescents with HIV infection acquired in infancy. D Melvin et al, October