Transition Program of HIV-infected adolescents to Adult HIV care in Buenos Aires, Argentina S. Arazi Caillaud 1, D. Mecikovsky 1, A.Bordato 1, J.Lattner 2, L.Spadaccini 2, C.Rodríguez 3, R. Posada 4, P.Cahn 2, R. Bologna 1 1 Hospital de Pediatría Dr J. P. Garrahan, Buenos Aires, Argentina 2 Hospital Fernández, Buenos Aires, Argentina 3 Hospital Cosme Argerich, Buenos Aires, Argentina 4 Mount Sinai School of Medicine, New York, USA

Background With advances in ARV therapy most HIV-infected children survive into adulthood Optimal health care includes a formal plan for the transition of care from primary pediatric care to adult health-care providers Transitioning difficulties include changes of puberty, factors related to HIV infection (disclosure, stigma, parental loss, poor treatment adherence, poverty, sexual life), family resistance, and limited training of health professionals Scal P,. J Adolesc Health. 1999;24:

Background Facilitators: Transition planning Introduction of concept of transition to patient and family Education and empowerment:  Independence, autonomy, and decision making  Health education: disease understanding  Ways to obtain solutions from health professionals  Rationale of antiretroviral treatment  Psychosocial support Committee on Pediatric AIDS Pediatrics 2013; 132:

ARGENTINA Buenos Aires Hospital de Pediatría Garrahan 507 HIV-infected children in follow-up Median age: 12 years (0.3-21) Transition Program in Buenos Aires, Argentina Argentina has a prevalence of 130,000 HIV cases, with 100 ( ) children newly infected per year Free access to HIV treatment (ART + care)

Transition Program Pilot project: 2007 (cross- sectional review) Transition program:  Phase 1: Team activities (local team, identification of potential adult-care centers, development of guidelines, communication plan, registry) Patient and family activities (Transition Clinic, workshops, peer support groups): risk reduction, empowerment, autonomy, how to “navigate” the new hospital )  Phase 2: Actual transition to adult care  Phase 3: Monitoring and Evaluation

Pilot Study: Baseline characteristics (N:85) Median age, years (IQR)18.2( ) Sex N (%)females37(43.5) males48(56.5) Median age at diagnosis years (IQR) 3.8( ) Duration of treatment, years (IQR)14( ) HIV transmission category N (%) Perinatal72(84.7) Transfusion 7(8.3) Others 6(7.0) CDC Category C events N (%)54(63.5)

Transition Program Pilot project: 2007 (cross- sectional review) Transition program:  Phase 1: Team activities (local team, identification of potential adult-care centers, development of guidelines, communication plan, registry) Patient and family activities (Transition Clinic, workshops, peer support groups): to provide support and risk reduction counseling, help them to “navigate” the new hospital  Phase 2: Actual transition to adult care  Phase 3: Monitoring and Evaluation

Workshops – Peer support groups Multimedia sessions: Interactive activities Videos Different means of communication (SMS, dropbox, telephone calls) Transition clinic with more flexible appointments Medical and social history was communicated to accepting provider by a physician Guide to “navigate” the new hospital has been designed

Welcome to the Infectious Diseases Unit

Prospective, observational study Setting: Hospital de Pediatría Dr J.P.Garrahan Adult centers(receptors): Hospital Fernández Hospital Argerich Population: adolescents HIV infected as children > 16 years enrolled at the pediatric hospital, and transferred to adult health-care centers between 06/2007 and 12/2013 Aim of the study: to evaluate the transition program  Transition was considered successful when at least 2 clinic visits and 1 viral load testing took place at an adult- care center within 6 months after referral  Demographic, clinical, virological, and social characteristics of adolescents at the time of transition were evaluated  To evaluate the contingency tables Fisher or Chi square Tests were used. Materials and methods

Characteristics of 230 HIV infected adolescents Age, median yrs (range)18(16-22) Sex N (%)female117 (51) male113 (49) Transmission category N (%)perinatal222 (96) transfusion 5 (3) Others 3 (1) Clinical stage N (%)A29 (12.6) B54 (23.5) C133 (57.8) Immunological Stage N (%)133 (14.3) 257 (23.9) 3126 (65.9) Post-transition follow-up, median mos (range)38(3 - 67) Laboratory tests done post-transition (median, IQR)3(1 – 4) Last Viral Load < 50 copies/ml N, %145(62.9) Last CD4 count/ml Median (IQR) 550( ) Results

Results Transitioned N= %

Results Variables associated with transition outcome VariableRRCI 95%p Sex – Age0.42 Loss of one or both parents – Caring for his/her own health – 0.63<0.001 Substance use Not attending formal education – Missed clinical appointments at pediatric hospital – 20.5< Transition delay – Adult-care Hospital0.70

Conclusions 1.A program with clear goals and specific strategies to support and prepare adolescents for the transition process has been associated with high rates of successful transitioning of HIV infected adolescents 2.The rate of successful transitioning was 72.3% and most of the patients were virologically suppressed (63%) with a median CD4 count >500 céls/mm3 3.Adequately caring for his/her own health has been associated with successful transition 4.Lack of adherence to clinic appointments has been associated with transition failure 5. Substance use and not attending formal education could be risk factors for transition 6.Special focus on autonomy, prior adherence, and psychosocial support need to be ensured

Pediatric Team (ID, Mental health, ginecologist, social worker ) Adult Health care Team (ID, Mental health, social worker ) Acknowledgements We would like to thank the patients who participated in this program and their families, all health care personnel and volunteers Fogarty AITRP #5D43 TW001037

Results VariableN% Parents alive Loss of one parent Loss of both parents Attendance to schoolYes No Smoking (N: 187)No Yes Alcohol use (N: 187)No Ocassional (1/week) Frequent (>1/week)189 Substance use (N:187)No Yes Habits and social characteristics of patients in transition

Acknowledgements We would like to thank –the patients who participated in this program and their families, all health care personnel – Fogarty AITRP #5D43 TW001037