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1 BHIVA AUTUMN CONFERENCE 2010 Including CHIVA Parallel Sessions Dr José Tomás Ramos Amador University of Madrid, Spain 7-8 October 2010, Queen Elizabeth II Conference Centre, London BHIVA AUTUMN CONFERENCE 2010 Including CHIVA Parallel Sessions Dr José Tomás Ramos Amador University of Madrid, Spain COMPETING INTEREST OF FINANCIAL VALUE > 1,000: Speaker Name Statement Jose Tomas Ramos Amador: Acts in a consultancy capacity to BMS Date 27 September October 2010, Queen Elizabeth II Conference Centre, London 1

2 10/15/2010 Moving forward to transitional care José T. Ramos Infectious Disease Unit Department of Paediatrics University Hospital Getafe (Madrid) London 8th-October-2010 Outline Issues in HIV-infected adolescents and young adults Current status of HIV-infected adolescents and young adults Transfer to Adult clinics 2

3 Adolescence - young adulthood Adolescence: Transition stage of growth and development between childhood and adulthood Great cultural variability WHO: Life period between years USA: Age range between years Europe and UK: Life period between 12 and years Adolescence-young adulthood and HIV - In Europe most children with perinatally acquired HIV are now staying healthier and getting older. Natural history of perinatally acquired HIV needs to be established through adulthood. - Advances in the management (MDT) of HIV-infection in children have led to an increase in life-expectancy and quality of life in children with perinatally acquired HIV-infection - HIV has become a chronic condition: increasing number of adolescents and young adults being transferred to adult clinics - Adolescence and young adulthood: enormous impact as a period of potential infectivity to others through sexual transmission 3

4 Adolescence-young adulthood and HIV Chronic life limiting condition Lancet 2008;372:293-9 Long-term history of HIV-related medical complications Prolonged antiretroviral therapy, multiresistant virus Regular medication: most bid interferes with daily life weekends and holidays: adherence Adverse effects af ART: changing in body image, lipodystrophy: adherence STD: Stigma and secrecy Family disease: other (s) family member affected / caregiver stress for disclosure Social/immigration, fear for the future stigma Adolescence-young adulthood and HIV issues - Turbulent time of adolescence: risk taking - School performance and potential neurocognitive impairment - Adherence - Metabolic complications - Disclosure and disclosure to others - Relationships, onward transmission, pregnancy 4

5 School performance Cross-sectional study from the Madrid Cohort. n: 75 adolescents, age 15.9 ( y.) 25,4% Support No At School Private 20% Lost Years % 34% 47,8% 26,9% At school 89.2% 42% Medin G, 12th EACS Cologne, HIV Medicine supl. Abstract PS 9/5 Psychosocial profile: neurocognitive impairment Cross-sectional study from the Madrid Cohort. n: 75 adolescents, age 15.9 ( y.) SDQ Behavioural problems 9,50% Difficult social relationships Emotional Problems 12,20% 28,40% SDQ Hyperactivity 35,10% Medin G, 12th EACS Cologne, HIV Medicine supl. Abstract PS 9/5 5

6 Psychosocial profile: neurocognitive impairment Lower performance language and word recognition skills than seroreverted children Brackis-Cott E, AIDS Patient Care STD 2009; High rate of neurocognitive impairment in perinatally infected adolescents (67%) Paramesparan Y, J AIDS 2010; 55:134-6 Cross-sectional study from the Madrid Cohort: WISC, age 13.5 y (6-16 y.) WISC: 19 patients IQ: 75.6 (48-104): Lower than reference IQ values for non HIV-infected children Level IQ n (%) Medium (26%) Low normal (16%) Low (21%) Very low < 69 7 (36%) Verbal comprehension Perceptual Reasoning Working memory Processing speed Mean Range Percentile Adherence Loss of virological control in ACTG 381 after 3 years of follow-up n: 120 adolescents and young adults Predictive factors of failure Poor adherence High baseline viral load Flynn P, AIDS Research HR 2007;23:1208 6

7 Toxicity: Prevalence of metabolic disorders n: 52 Age: 127 months (53-219). Time on HAART: 54 m (1) Cross-sectional study from the Madrid Cohort. n: 75 adolescents, age 15.9 years (2) Hypercholesterolemia (> 200) 27% Increased LDL (> 130) 25% Hypertriglyceridemia (> 170) 30% Lipodystrophy (clinical) 36% Hyperlactatemia (>2.2 mmol/l) 6% Hyperinsulinemia (>15 IU/ml) 31% Osteopenia (lumbar z score <-1) 38 % Concern for cardiovascular disease, diabetes and osteoporosis 1-Ramos JT, 10th CROI 2003 Boston, Abstract Blazquez D, 12th EACS Cologne, HIV Medicine supl. Abstract PS 9/3 Outline Issues in HIV-infected adolescents and young adults Current status of HIV-infected adolescents Transfer to Adult clinics 7

8 TOTAL AIDS cases HIV/AIDS cases in Spain Women (20%) (31-Dec-09) Increasing proportion of HIV infection acquired heterosexually New infections per year relatively constant: 2500 Children (<13 years): 1015 => 1.3 % (91% Vertical) (<18 years): 1506 => 2 % Estimate of children/adolescents living with HIV: 800 Madrid cohort of HIV-infected children (Dec 09): 198 Young adults transferred to adult clinic: 74 (24%) Madrid cohort of HIV-infected children n: Initiation of cohort 264 (January 03) Vertical transmission 257 (97%) n: Follow-up 198 (December 2009) VT: 193; transfusion 2, mother non-infected 3 Age (years): 13.6 (1-22) Race: Caucasian 151 (76%) Gender: girls 119 (60%); boys: 79 (40%)* (p<0.05) HCV Coinfection: 18 (9%) HBV: 4 (2%) Adoption: 42 (21%) CDC Clinical stage C: 65 (33%) CDC Immunological stage 3: 119 (60%) Time on antiretroviral treatment (years) Lenght HAART (years)

9 HIV-infected adolescents and young adults VIH: current status Dramatic decrease in vertical transmission with HAART in mother and infant Older HIV-infected children coming from developing countries Decrease in morbidity and mortality Upward shift in median age in outpatient HIV-clinics in children and adolescents Adolescents > 12 years: > 50 % Median age in HIV-infected children Madrid cohort (years) ,3 10,4 11, ,6 13,3 13, <

10 New HIV-diagnosis in the Madrid cohort of HIV-infected children since 1997 (n:120) SS-Africa-3 Southamerica-3 Spain n:22 1- Immigrants: 16% 2- Immigrants: 34% 3- Immigrants: 87% SS-Africa-2 Latin America n:35 Spain-2 23 SS-Africa-1 Latin America n:63 Spain : : : Clinical, immunologic and virological status of adolescents Cross-sectional study from the Madrid Cohort. n: 75 adolescents, age 15.9 ( y.) Clinical Status (CDC) 26% Immunologic (CDC) 9,50% 49% A B C 62,5% 28% ,5% Nadir CD4 303cel/mm 3 (1-1163) Current status (cross-sectional study: June 2009) Median CD4: 715 cel/mm 3 (193,1494) Median viral load: 50cop/ml (50, 64632) Viral load <400cop/ml: 79% Viral load >5000 : 10% Medin G, 12th EACS Cologne, HIV Medicine supl. Abstract PS 9/5 10

11 Time on ART treatment Cross-sectional study from the Madrid Cohort. n: 75 adolescents, age 15.9 Time with ARV: 12 years (0-16). Time with HAART: 10 years (0-12) 29% received 4 HAART regimens 7% of patients were without ART at last visit. (2% never treated) 93% of population received HAART Medin G, 12th EACS Cologne, HIV Medicine supl. Abstract PS 9/5 Know their diagnosis 80 % Age of disclosure < 10 years 19% years 38% years 41% > 15 years 2% - Family and relatives 16% - Friends 8% - School 19% 17 (22.7%) Have boyfriend / girlfriend Disclosure: 6 (35%) Medin G, 12th EACS Cologne, HIV Medicine supl. Abstract PS 9/5 11

12 Outline Issues in HIV-infected adolescents and young adults Current status of HIV-infected adolescents and young adults Transfer to Adult clinics Transfer to adult clinics * Planning appropriate services in adult life requires an understanding of the peculiarities of perinatally acquired HIVinfection and the process through pediatric care. * Young adults with perinatally acquired HIV-infection require coordinated multidisciplinary transitional care services for careful long-term follow-up in adult life. * The increasing proportion of children achieving adulthood highlights the need for multidisciplinary strategies to facilitate transition to adult care specific to perinatally acquired HIV infection * Without adequate preparation, the transition process can be compromised with potentially serious health consequences: Survey: Difficult transition, frequent feeling of lack of emotional support Wiener LS. J Pediatr Psychol (Dec);

13 Transfer to adult clinics Barriers * Medical * Emotional * Psychosocial Gradual transition Not recommended transfer if - Recent change of HAART - Poor immunovirological control - Emotional unstability - Disclosure not done BHIVA. Supporting transition for young people who have grown up with HIV infection. Steps in transition process * Assess the readiness of the adolescent for transition - Transition process explained to adolescent and parents - Education on HIV and sexual health - Adolescent seen part of the time alone - Visit by clinical nurse specialist and pshycologist - Young person met adult physician (along with paediatric MDT) * Structured plan for transition and timeline 13

14 Strategies for transfer to adult clinics * Gradual dynamic process of the MDT Explanation of the transitional process Transfer plan: when, how? * Strong collaboration between paediatric and adult MDT * Units of HIV-infected adolescents * Family clinics to Transitional care to Adult services for HIV and related illnesses * Mediation through a reference friendly figure between both MDP Ensure follow-up patient and family Gabiano C. 2nd International Workshop on HIV Pediatrics, Vienna 2010, P-37 Adultos Transfer to Adult clinics in the Madrid cohort of HIV-infected children n: Year of transfer 14

15 Demographics of children by the time of transfer to adult unit (n=74) Age (years) (13-23) Female 39 (53%) Immigrants 5 (7%) CDC class C 41 (56%) CDC class 3 47 (63%) Median nadir CD4%: 7% (0.2-28) Median current CD4 548 (99-916) Median current CD4 percentage 26.5% (10-39) Hepatitis C and HBV coinfection 8% / 4% Never treated 2 (2.7%) Monotherapy or dual therapy 2 (2.7%) HAART 70 (94%) qd regimen 16 (23%) Median length AR: 10.7 years HAART: 6.6 years Saavedra J. 2nd International Workshop on HIV Pediatrics, Vienna 2010, P-57 Regimens of HAART and virological status by the time of transfer to adult units (n=74) Regimen of HAART at tranfer 84% prior mono or dual therapy 41% 26% 1st 2d > 4th 3rd 19% Plasma VL log 10 54% 27 % 19 % 14% 0 32% triple class experienced < >4.0 Resistance: 40 patients genotypic resistance (54%) Wild type: 8 % RT 82% (24% NNRTI) RT only 12 % PI only 8 % RT + PI 54% Saavedra J. 2nd International Workshop on HIV Pediatrics, Vienna 2010, P-57 15

16 Proportion of patients with lipodystrophy: 40 (54%) n: 74 LH 25% LA 22% Mixed 53% Saavedra J. 2nd International Workshop on HIV Pediatrics, Vienna 2010, P-57 Perinatally acquired HIV: Paediatric legacy for adult clinics Increasing numbers of young people living with HIV acquired perinatally will transfer to adult clinics in the near future Long term history of antiretroviral exposure - High rate of resistant virus - High prevalence of metabolic complications Research on new strategies to improve adherence to this heavily pretreated population is required Preliminary data on neurocognitive function are of major concern Coordinated multidisciplinary transitional care services needed Long term follow-up of this specific HIV-infection is necessary 16

17 Madrid Cohort of HIV-infected children and adolescents 1-Hospital 12 Octubre: Ignacio González, Pablo Rojo, María Isabel González-Tomé, Daniel Blázquez 2-Hospital La Paz: María Isabel de José, Beatriz Larrú. 3-Hospital Carlos III: María José Mellado, Pablo Martín-Fontelos 4-Hospital Alcalá de Henares: José Beceiro 5-Hospital Móstoles: Miguel Angel Roa 6-Hospital de Leganés: Cristina Calvo 7-Hospital Niño Jesús: Jorge Martínez-Pérez 8-Hospital Gregorio Marañón: MªLuisa Navarro, MªDolores Gurbindo; Jesús Saavedra, Santiago de Ory, María Angeles Muñoz-Fernández 9-Hospital de Getafe: Sara Guillén, Luis Prieto, José Tomás Ramos. Psychologist: Gabriela Medín, Isabel Mellado, Marisol Cortés Social workers and NGO volunteers: Red Cross and Apoyo Positivo Grants FIPSE nº 36405/03, 36644/07 and /09 FIS: nº PI Thank you for your attention 17

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