1. PEDIATRIC PLENARY: Special Issues in Adherence for Children and Adolescents Ruby FayorseyPediatric Clinical AdvisorICAP-NY Supporting Sustainable Adherence to HIV Prevention, Care & Treatment ICAP Technical Workshop October 19-22, 2009Kigali, Rwanda

2. Outline Review ICAP adherence data for children Review the pediatric adherence literature, compare LRS and HRS Developmental approach to adherence to care and treatment in pediatrics Country Examples S2S Kenya Ethiopia

3. Cumulative Pediatric ART Enrollment, as of June 2009, N=30,859 n=3,460 n=3,217 n=3,604 n=5,600 n=2,570 n=874 n=4,047 n=1,590 n=4,161 n=30,859 n=1,651 n=85 % pediatric patients on ART

4. Status of Pediatric ART Patients at ICAP HIV Care and Treatment Programs (June 2009 n=23,267*) *Excludes Cote d’Ivoire, Swaziland and Zambia due to incomplete data on status variables. ** Includes patients who transferred out while on ART.

5. Proportion of Pediatric Patients (5-15 yrs) with CD4 Count at Baseline, 6, and 12 months after ART Initiation (June 2009 PLD)

6. Cumulative Pediatric HIV Care Enrollment, as of June 2009, N =69,575 n=152 n=4,688 n=6,790 n=9,654 n=3,404 n=1,478 n=3,786 n=16,355 n=5,830 n=10,411 n=69,575 n=7,027 % pediatric patients in HIV care

7. Adolescent Enrolled in Care: The Tip of the Iceberg? (PLD June 2009 ) Total # of active children < 19 years in PLD on ART= 4428 Total/% 0-5 yrs= 2302 (52%) Total/% 6-10yrs=1179 (26%) Total/% 11-19 yrs=947 (22%) Includes data from Rwanda, Kenya, Tz and Mz, n=98 sites

8. SOCs and Pediatric Adherence Provides more detailed assessment of adherence Adherence to care and treatment % of children reporting taking > 90% of medication % of children with documented contact with HCW within 2 weeks of missed appointment % of children with CD4 done every six months Root case analysis

9. Significant Decrease in LTFU at the 13 ICAP Sites with SOCs Implementation, Sep 07 - Sep 08 P=0.003 Tene et al. Implementers Meeting 2009

10. In Summary what does the ICAP Data tell us about Adherence in Children? Programmatic data not individual data Adherence to care not treatment Clinic attendance, lost to F/U, death and stopped ART Indirect measures of adherence (CD4 change over time) Increasing population of perinatally infected adolescents Importance of SOCs to complement routinely collected data

11. What do we know about Pediatric Adherence Non-adherence is prevalent (20-50%), increases with age (Watson, 2000, Gibb 2003, Mellins 2004, Williams 2006, Martin 2007) Range of factors that influence adherence (Reddington 2000, Pontalli 2001, Steele 2003, Williams 2006, Mellins 2006, Barack 2007) Child Caregiver/family Medication Related Factors Healthcare system (Provider-patient/family relationships) Structural/Community

12. Comparing Adherence in HRS and LRS (1) Vreeman RC et al Ped Infect Dis J 2008, Simoni J M et al, Pediatrics , 2007

13. Comparing Adherence in HRS and LRS (2) Vreeman RC et al Ped Infect Dis J 2008, Simoni JM et al, Pediatrics 2007

14. Comparing Adherence in HRS and LRS (3) Vreeman RC, et al., Peds Infect Dis J 2008, Simoni JM, et al., Pediatrics 2007

15. Comparing Adherence in HRS and LRS (4) Vreeman RC et al Peds Infect Dis J 2008, Simoni JM et al, Pediatrics 2007

16. Barriers Reported by Adolescents VAS to assess adherence in adolescents in Uganda: 49% reported missing a dose in the past 30 days Age 12-18 Barriers cited were: Forgetting 39% Staying away from home 30% Sleeping through dose time 22.5% Side effect of medication 10% Focus group sessions with adolescents in Western Kenya Age10-16 Barriers to adherence Just forgetting Delaying dose because of school or work Tired of taking medications Not having food Travelling to the clinic to get meds Needing to hide the meds from others in the house hold, neighborhood and school Bakeera-Kitaka S et al. IAS 2009 Vreeman R et al. IAS 2009

17. What About Disclosure and Adherence? Inconsistent relationship between disclosure and adherence in HRS, most studies are confounded by age Studies in LRS seem to suggest improved adherence with disclosure of HIV status In Kenya, N=37(Akolo , IAS 2009) < 12 years not disclosed to (90-100% adherence) Early disclosure with ongoing support from parents/guardians (90-100% adherence) Late disclosure with ongoing support from family (80-89% adherence) In Uganda, N=42 Complete disclosure and strong parental relationships were related to good adherence (Bikaako-Kajura 2006) Study from Mulago, N=170 Disclosure of HIV diagnosis to only caregiver associated with low adherence (Nabueera-Barungi 2007)

18. Why is Pediatric Adherence Difficult?

19. Multiple Factors Affect Adherence and Change Overtime

20. Given all the factors that threaten adherence how can we support and promote adherence in children and adolescents ?

21. Developmental Approach to Pediatric Adherence

22. Developmental Characteristics Affecting Adherence

23. Adherence Cascade CHILD EDUCATE MONITOR CARE &TREATMENT MEASURE INTERVENE PARENT/CAREGIVER HEALTH CARE SYSTEM/PROVIDER

24. Adherence Cascade Health Care System/Provider EDUCATE MONITOR CARE & TREATMENT INTERVENE MEASURE Parents, aunts, uncles, grandparents, siblings, peers, friends, foster parents, nanny/house help

25. What are some of the Adherence Challenges you can Expect?

26. How would you Provide Adherence to Care Support?

27. How would you provide Adherence Education and Preparation

28. Adherence Preparation Strategies

29. Other Adherence Preparation Tools

30. Adherence Assessment Caregiver/Self-report is the least expensive and most frequently used (tends to over estimate) Concerns about social desirability and recall bias Child report accurate when developmentally appropriate Non judgmental attitude: trust, partnership and honesty MDT approach- its everyone's responsibility

31. Strategies Evaluated in the Literature to Improve Adherence in Children Few strategies for improving adherence in children have been reported in the literature Directly Observed Therapy- Gigliotti 2001, Roberts 2004 Educational Program using treatment buddies- Lyon 2003 Insertion of G tube- Shingadia 2000 Behavioral Change-Rogers 2001 Home based care/Nursing- Ellis 2006, Berrien 2004 Most are descriptive with small sample sizes Recently more data from LRS Psychosocial and treatment literacy activities- Van Winghem 2008 Family based interventions –Alicea IAS 2009 Community partnerships- Owiso IAS 2009

32. Strategies and Interventions to Facilitate Adherence (1) Child/Caregiver and Family Intensive education before starting therapy, provision of educational materials (visual and written ) Use of reminders, link to daily activities Share responsibility for remembering medication within household Small incentives for children when they take their medicines Psychosocial support services (family support/family based interventions, treatment buddies, individualized and family counseling Adherence aides (pill boxes, adherence calendar, alarms) Developmentally appropriate HIV disease education and disclosure DOT Social support/community linkages

33. Strategies and Interventions to Facilitate Adherence (2) Health care system Establish long term relationship with child, family and clinic staff Child friendly clinics Family centered care Functioning appointment systems Efficient patient defaulter tracing mechanisms Clearly defined ways to assess, monitor and provide adherence support Support groups (children, adolescents and caregivers) Mentoring of providers and counselors MDT approach to adherence Use data for quality improvement

34. Strategies and Interventions to Facilitate Adherence (3) Medication Reduce number of pills (FDC) and frequency of administration Switching large volumes to pills Labeling syringes, color coding medications Blister packs Adapt treatment to child and families lifestyle Use the most tolerable combinations Minimize side effects & drug interactions

35. Summary Adherence in children in LRS is equal or may be better than children in HRS Adherence estimates vary depending on measurement strategy self/caregiver report is most commonly used Factors affecting adherence in children and adolescents are complex and change over time Need to have the appropriate systems to facilitate adherence (appointment systems, defaulter tracing etc.) Strategies that work must be multifocal and broad, developmentally appropriate for the child, should also include caregiver, family, health system and community

36. MURAKOZE

37. S2S-Adherence Support for Adolescents Kenya-Pediatric Appointment and Adherence Systems Ethiopia- MDT Approach to Adherence COUNTRY EXAMPLES

38. Supporting Sustainable Adherence to HIV Prevention, Care & Treatment ICAP Technical Workshop October 19-22, 2009Kigali, Rwanda Adherence Support for Adolescents Marina Rifkin, Program Monitoring Advisor South 2 South – South Africa Partnership for Comprehensive Family HIV Care and Treatment Programs

39. Adolescents in Care at Tygerberg Children’s Hospital Currently a total of 60 (25%) of the approximately 240 children on ART are between the ages of 10 and 17 Clinical services are offered on different days for different age groups (10-11 years, 12-13 years, 14+ years) At age 18 patients are transferred to the adult clinic, based on developmental readiness 39

41. Ensure that patients become well-adjusted adolescents

42. Allow for a less abrupt transition into adult care

43. Provide a holistic approach geared at adolescents, the issues they are faced with and providing tools and support structures to ensure that they are nurtured through this difficult period of their lives

44. Support and education for parents of HIV positive adolescents40

46. Adherence to medication

47. Arts and crafts

48. Life skills/caring for yourself

49. School-related issues

50. Family issues41

52. Disclosure

53. Sexuality and sexual abuse

54. Financial issues/fund raising

55. Arts and crafts“I like the way the information was delivered. How to teach children about HIV/AIDS and the importance of giving meds as well. How to help them with their schoolwork, and I really enjoy the day and the way we were treated” - Grandma 42

58. Soccer and HIV

59. Hero book43

60. Thanks to: 44 Sr. Vivian O’Brian Sonja Oberholse Staff of the Tygerberg Family Clinic Patients and their families

61. PEDIATRIC APPOINTMENT & ADHERENCE SYSTEMS Frida Njogu, MD, MPH ICAP Kenya Supporting Sustainable Adherence to HIV Prevention, Care & Treatment ICAP Technical Workshop October 19-22, 2009Kigali, Rwanda

62. Challenges in Pediatric Appointments, Adherence and Retention Integration of other child survival mechanisms e.g. IMCI, Immunization Change of caretaker – death of parent Elderly caretakers – literacy, ill health Dependent on ‘others’ to bring them to clinic Difficulty quantifying syrup used (compared to pill count)

63. Systems To Support Pediatric Adherence Appointment system Diary integrates appointments and assessment Integrated services Adherence support tools:

64. Appointment Diary

65. Integration... Dedicated peds clinic day Same day appointments for mother/caretaker and family (family care clinic concept) Integrated TB/HIV clinic for co-infected Integrated with immunization schedule On same day receive/are linked to nutrition supplementation in some sites (Machakos, UNICEF linkage) Same day have caretaker and pedpsychososcial support groups Bi-annual RBS and 3 monthly BP checks in MtitoAndei to improve retention and adherence

66. Colour Coding System Rationale: elderly caregivers Early stages of pilot SOP developed Waterproof coloured strip on syringe, corresponding coloured label on bottle Top edge on syringe marks the dose Demonstrated during dispensing, reverse demonstration at adherence assessment

67. Colour Coding

68. Plans Further and more complete integration of services Roll out Color Coding system Treatment Supporter system for elderly caretakers

69. Collaboration BetweenCU-ICAP Ethiopia and The Psychosocial Unit at Adama Hospital Yoseph GutemaPediatric/PMTCT Advisor ICAP Ethiopia Kigali, RwandaOctober 21,2009 Supporting Sustainable Adherence to HIV Prevention, Care & Treatment ICAP Technical Workshop October 19-22, 2009Kigali, Rwanda

71. no of OVC = 1020

74. Adama Hospital ART Center

75. Adama Hospital Pediatric Friendly Clinic

76. Adama Hospital Pediatric Friendly Clinic

77. Cumulative no of Infants & Children Ever Started and Ever Enrolled in Care at Adama Hospital

78. UTCSA at Adama Hospital Psychologist is hired to attend to needs of children in community Provides psychological support for abused children Provides care and support for abandoned children Facilitate age determination service for children in conflict with the law

79. Unit for Treatment of Children who need Special Attention

81. Mental health problems

82. Child abuse

83. HomelessCollaborate with the psychologist as part of the MDT to meet the special need of the children enrolled in care at Adama Hospital

84. Psychosocial problems referred from ART Clinic

86. 14 yrs old child (sexually abused)

87. Next Steps Establishment of Pediatric Peer support Group/ buddies Expanding the service to other ICAP supported facilities Adama Pediatric Psychosocial unit will be model center

88. Photo: Lora Iannotti Thank You For Your Attention