1. 1 Pediatric ARV adherence HAIVN Harvard Medical School AIDS Initiative in Vietnam

2. 2 Learning Objectives At the end of this lecture, each trainee should be able to: Define what is adherence Understand and address specific issues of pediatric adherence Assess, prepare, initiate, monitor and follow up pediatric adherence Provide support to parents/caregivers in adherence

3. 3 Content Definition pediatric adherence in the world pediatric adherence barriers How to address adherence barriers Adherence assessment and preparation adherence measurement and follow up Case study Key points

4. 4 Adherence definition Ability to take the medication as prescribed, –At the right time –At the right dose –And the right way Adherence is a dynamic process and changes over time Adherence is successful when > 95%

5. 5 Pediatric adherence in the world 90 % of the 2.3 million HIV-infected children in the world live in low- and middle- income countries Studies showed that children have a better adherence (> 75%) in low- and middle – income countries than children from high-income countries (adherence <75% ) Understanding children’s adherence in resource-limited settings presents a critical challenge, because these same settings have limited options if viral resistance develops Vreeman R., Wiehe S., Pearce E., Nyandiko W., A systematic Review of Pediatric Adherence to Antiretrovoral Therapu in Low- and Middle-Income Countries, Pediatr Infect Dis J 2008;27/ 686-691)

6. 6 Adherence barriers Related to the child: – Developmental age of the child – Emotional : trauma, stress, depression Related to the parents/caregivers: – Parent-child interaction – Level of education – Inconsistency of caregivers, several caregivers in pills supervision – Emotional : fear, stress and depression of caregivers

7. 7 Adherence barriers Related to medication: –Palatability –Number of pills –Side effects (e.g nausea, vomiting) –Limited options to switch to second line regimen in case of treatment failure

8. 8 Adherence barriers Include treatment regimen first and second line?

9. 9 Adherence barriers Stigma and discrimination Non disclosure – secrecy make adherence difficult Other psychosocial issues (economic issues, instable housing etc.) can lead to lack of adherence

10. 10 How to address adherence issues: Identify the primary caregiver (closest to the child) Educate caregivers and children on HIV and drug Adapt and simplify drug regimen whenever possible and use FDC to reduce number of pills.

11. 11 How to address adherence issues: Provide pill boxes and reminder tips (set alarm clock) Involve the child/adolescent in the treatment – can remind the caregivers to give the pills Counsel about disclosure or stigma and discrimination, emotional issues Provide proper referrals to address psychosocial barriers (housing issues etc.)

12. 12 Adherence preparation Create a trusting relationship between the Health care providers, the caregiver and the child/adolescent Include the child in the treatment plan, discussion, ask his opinions, do not talk only with the caregiver. Work closely in collaboration with the multidisciplinary team to provide HIV and ART education and counseling

13. 13 Adherence preparation Develop a treatment plan – WHO will administer the medications? parents, caregivers, siblings, the child himself – WHAT medications will be given? educate and provide clear instructions on medications their administration – WHEN will medications be given? plan specific times and routines – HOW will medications be given? with or without food, crushed pills

14. 14 Adherence assessment’s readiness Before initiating ARVs make sure that: –Primary caregiver is identified and motivated to administrate the ARV treatment and OI’s drugs –Caregiver and/or child (if old enough) understand about: drugs instruction Importance of adherence Side effects management

15. 15 Adherence assessment’s readiness Identify any potential barriers to adherence (stigma, housing, economic issues etc.) The time of preparation is crucial. Take your time unless there is an emergency to treat

16. 16 Adherence measurement Caregivers report Self report whenever the child can respond Pill counts (difficult with suspension) Monitoring adherence with CD4, VL however some studies showed no correlations between reports of adherence and CD4 or VL

17. 17 Adherence follow up Do not assume “once adherent, always adherent” Over time: – Children/adolescents may be tired of taking medications – Caregivers may be tired of administering/supervising medication – Health care providers may be tired of monitoring/supporting adherence Beware of ADHERENCE FATIGUE International Center for AIDS Care and Treatment Programs, Columbia University

18. 18 Adherence follow up Check if any first side effects occur Encourage disclosure Refer to home based care team and counselor when necessary Review adherence aids (pill boxes, calendar, alarm clock )

19. 19 Special considerations for adolescents Risk of non adherence is important in adolescents due to the following issues: Denial and fear of their HIV infection Misinformation Distrust of the medical establishment Lack of belief in the effectiveness of ARV Unstructured and chaotic lifestyle Don’t want to be different from their peers

20. 20 Special considerations for adolescents Prepare good adherence by explaining: –Life long treatment –How to avoid side effects –Issues related to lipodystophy (body shape) Simplify regimen (FDC) Raise questions related to puberty and sexuality Involve the adolescent in the care and treatment Propose peer support group to share experience

21. 21 Key Points Pediatric adherence is complex as it relies on a third party (the caregiver) pediatric adherence implies many barriers to overcome Drug adherence is crucial not only for ARVs but also for OI’s drugs The preparation and assessment’s readiness time to adherence is crucial Set up proper tools for adherence measurement and follow up

22. 22 The involvement of the child in the treatment and encouraging disclosure will help for better adherence Remember adherence is a dynamic process that changes over time: you regularly need to check and adapt the treatment plan whenever necessary

23. 23 References Vreeman R., Wiehe S., Pearce E., Nyandiko W., A systematic Review of Pediatric Adherence to Antiretrovoral Therapu in Low- and Middle-Income Countries, Pediatr Infect Dis J 2008;27/ 686- 691)

24. 24 Thank you! Questions?