Determinants of Adherence to HIV Medication in Adolescents Living in Constanta, Romania

1. Determinants of Adherence to HIV Medication in Adolescents Living in Constanta, Romania A Qualitative Application of the Information-Motivation-Behavioral (IMB) skills model Ana-Maria Schweitzer, Baylor Black Sea Foundation, Constanta, Romania Alexandra Dima, School of Health in Social Science, University of Edinburgh, UK K. Rivet Amico, Center for Health, Intervention and Prevention, University of Connecticut, USA

2. Background Information • Nosocomial infection in the late 1980’s (> 1200 patients in the initial group, > 700 still alive) • HIV-infected adolescents receiving antiretroviral (ARV) medication since childhood (>450 on ARV for >1 year) • BaylorBlack Sea Foundation – multidisciplinary care withinthe HIV centre of excellence

3. Adolescence – The Problem of Adherence • Up to 60% - at least once in their life time have or will haveissues with adherence to ARV • >90% of all detectable viral load cases are known to have issues with adherence • Adolescents change from having adherence largely managed by a care-giver to self-management

4. The IMBS Model (Fisher et al, 2006) Moderators: mental health, living conditions, healthcare, etc. Adherence information Adherence behavioral skills Adherence behaviour Health outcomes Adherence motivation

5. IMB Cross-Culturally • Qualitative work necessary to apply the model in this new socio-cultural context • 4 key questions: • Are the model’s concepts relevant in the new setting? • Comprehensiveness – are the concepts important in the new setting? • Accurateness – are the meanings of the concepts accurate in the new setting? • Does the model capture the complexity of adherence in the new setting? (Ware et al, 2006)

6. The Focus Groups 2 groups - 20 adolescents, 1 group - 9 health professionals Convenience sampling – from HIV patientsand service providers Written invitation – purpose (discussion group on adherence to medication), location, time, confidentiality

7. The Focus Groups • Semi-structured format (supportgroup) • Intro – meeting purpose and warm-up exercises • Information • What questions did you have about the treatment and how did you look for answers? • What do you know well/ less well about treatment? • Motivation • What motivates you/makes you feel less motivated to take your pills? • Contexts / Behavioural skills • Situations when it is easy/difficult for you to take the pills – solutions • End – feed-back regarding services • What advice would you give to a newly diagnosed person? (similar format adapted for health professionalsreporting on patient behavior)

8. Results – Emerging Themes • Information / Misinformation • How the medications are supposed to be taken • Side effects • If I feel ok, it’s ok to skip medications • Skipping medications does not affect health • If I cannot take one of the pills, it is ok to take only the others • If I take the strongest pill, I can skip the others • I can interrupt pill-taking if my blood tests are fine • It is important to take pills every day, irrespective of the hour

9. Results – Emerging Themes • Motivation (barriers / facilitators) • Fear of being seen by other people • Frustration about “having a limited freedom” • Good relationship with healthcare provider • Social support • Future plans for family, profession • Hope that a cure will be found sooner or later • Fear of being sick and hospitalized • Discouraged by death of friends under treatment

10. Results – Emerging Themes • Behavioural skills to … • Search for information • Obtain support from others • Manage adherence with busy schedule • Manage adherence in context of emotional problems • Take pills in privacy • Adhere when the support from care-giver is temporarily missing/ no longer available • Maintain adherence while dealing with interpersonal conflict • Manage adherence to multiple treatments

11. Conclusions • How did the model do given Ware et al.'s (2006) key questions? • Relevance – the model’s 3 core concepts were not directly tested, but used as a basis for the focus group guide Results suggest that Information, Motivation, and Behavioural Skills are relevant for our population • Comprehensiveness – no new concepts emerged (e.g. compared to African settings) • Accurateness – new themes within the 3 core concepts emerged (e.g. specific to long term treatment experience, adolescence, relationships) • Complexity – the variety of outputs extracted from raw data allow us to approach adherence flexibly in clinical practice • Limitations: convenience sampling, social desirability

12. Cognitive-behavioral Determinants Of Adherence Among Hiv-positive Adolescents In Romania • This study is supported by a grant from BIPAI and the Abbott FundanddevelopedbytheBaylor Black Sea Foundation at theCentrul Clinic de Excelenta - Spitalul Clinic de BoliInfectioaseContanta - Baylor College of Medicine - Texas Children’s Hospital – Abbott Fund • Team of investigators : • R.B.Wanless1, A.L.Dima2, A.-M. Schweitzer3, L.Vlahopol3 , E.A. Caraveteanu3 , I. Stochita3 , R.Diaconita3, R.K Amico4 , E.Remor5 , S.Ruta6 , S.Rugina7 1Baylor International Pediatric AIDS Initiative, Houston, 2University of Edinburgh, ClinicalandHealthPsychology, Edinburgh, UK 3Baylor Black Sea Foundation Romania, Constanta, Romania,  4University of Connecticut, Connecticut, United States, 5 Facultad de Psicología, Universidad Autónoma de Madrid, 6 Institutul de Virusologie Stefan Nicolau, Romania, 7 Spitalul Clinic de BoliInfectioase, Romania

13. Thank You! • Questions? • Contact details: office@baylor-romania.ro • References: Fisher, J.D., Fisher, W.A., Amico, R., & Harman, J.J. (2006). An information-motivation-behavioral skills model of adherence to antiretroviral therapy. Health Psychology, 25(4), 462-473 Ware, N. C., Wyatt, M.A. & Bangsberg, D. (2006). Examining Theoretical Models of Adherence for Validity in Resource-limited Settings: A Heuristic Approach.” Journal of Acquired Immune Deficiency Syndromes. 43(S1):S18-S22