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Adherence for Pediatrics: Plenary

Adherence for Pediatrics: Plenary






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  • Source: ICAP URS, June 2009Note: Includes sites currently supported by ICAP and reporting. Note: Swaziland was unable to report Apr-June; Numbers from Jan-Mar 09 were carried over Take home message:There is large variability for proportion of <1 year in ART care is about half of that in HIV care (23% v.s. 39% from previous slide).
  • Source: ICAP URS, March 2009Note1: Includes sites currently supported by ICAP and reporting. Take home message:Among those discontinued ART (14%), the majority (57%) had not had contact with the clinic for by at least 90 days (Lost to follow up), 39% had been reported dead and 4% stopped treatment stopped ART but continued in care.Person time:ART discontinuation per 1000 person years can capture the time element that is not captured by cumulative discontinuation rate reported each quarter. Two sites may have the same cumulative discontinuation rate at 20% but one site may have started providing ART 6 months ago while the other site may have started 2 years ago. Calculating the rate in person-time will show that the first site is losing patients at a greater rate than in the second site. Below, is a step-by-step explanation of how the rates were calculated:A. Assume patients starting ART on average started at “mid-point” of the quarter (i.e., at 1.5 months).100 patients started on ART during the quarter are assumed to have contributed 100 persons x 1.5 months or 150 person-months on ART during the quarterB. Number on ART at the beginning of the quarter is used to calculate the number of person-years of ART use that could be contributed if there were no deaths, transfers, stopping, or LTF during the quarter.500 patients enrolled as of the end of the previous quarter are assumed to contribute 500 persons x 3 months, or 1500 person-months of ART during the quarterC. Patients who stop ART during the quarterPatients who stop ART (die, transfer, are LTF, or otherwise stopped ART) are assumed to have done so at the midpoint of the quarter.35 people stop ART for any of the above reasons, they are assumed to contribute 35 persons x 1.5 months, or about 82 person-months.This person time must be subtracted from that in B in order to correct for the assumption of no stoppages during the quarter.Person-time on ART during the quarter= A + (B – C)=150+1500-82=1568 pm
  • Indirect measure of adherence. Under estimate of children who have received CD4. due to missing and undocumented data. data is from Jan 2005- June 2009Window periods:Baseline (1 month before and 1 month after)6 months (2 month before and 2 month after)12 months (2 month before and 2 month after)Dataset includes only the results of CD4 counts so if it’s not in the dataset we cannot know if it is missing (the test was done but not entered in the dataset) or if it was ordered but not done.This slide is a bit misleading. Probably because of undocumented or missing data? However the take home message is this. Children are not getting CD4 counts as recommended.
  • Source: ICAP URS, June 2009Note: Swaziland was unable to report Apr-June; Numbers from Jan-Mar 09 were carried over Take home message:Large majority of pediatric patients receiving HIV care were under 5 years of age (62%). In Nigeria and Zambia, the majority of pediatric patients were under 1. This is because of varying reporting requirements. On average kids between 0-2 should account for no more than 1/5 th and with improved and scale upof PMTCT services we should expect this number to decrease over time.
  • Adolescents are increasing and currently account for 1/5 of children in the PLD on ART. With time we expect this number to increase if we continue to implement strong PMTCT programs
  • Two systemic reviews of pediatric adherence in the literatureOne published in 2007 primarily HRSThe second published in 2008 was a review of Pediatric adherence n low and middle income countries.CaveatsVery early in scale-up experienceMostly smaller, non-representative samplesGenerally involving treatment-naïve patients
  • Study done in adolescents patients attending HIV clinic at Mulago Hospital. Used visual analogue scale to assess adherence. There were 76 adolescents who had been on HAART for at least 15 daysMedian age 13.7 (12-18 years)68% attending school27% lived in a HH where another parent was taking ARVsStudy form Kenya-Small numbers 23 adolescents , 3 focus group discussions with kids in 2 ART clinicsAge range 10-16 years only 2 had biological parents alive Voiced concerns about disclosing non adherence to their health care providersConcerned about secrecy in procurement, administration storage and disposal of medications
  • Looks at adherence to treatmentAkolo- small study only 37 participants half were disclosed to.Uganda- small study only 42 children ( 5-17 years median age 12 yearsMulago large study (170 children)- used self report, clinic based pill counts and unannounced pill counts at home.
  • What are the developmental characteristics that impact adherenceWhat are some of the adherence challenges you can expect in each developmental stage?How would you provide developmentally appropriate adherence education and preparation? How will you monitor and support adherence?
  • ARV treatment is rarely an emergencyTake time to prepare the child and the caregiver Personalize medication administration to match the specific aspects of a child’s and family’s lifeAddress the WHO, WHAT, WHEN, WHERE and HOW of medication administration
  • There is no perfect measure. Each method had advantages , disadvantages and trade offs.Emphasize the importance of honest reportingImportance of multidisciplinary approach to monitoringEmphasize need for communication with health care team (Trust, Partnership, Honesty)
  • Only one randomized study by Berrien evaluated Home nursing as a means of increasing adherence with 67 families. Designed to identify and resolve barriers to adherence. Used pill swallowing, and education. In the treatment group knowledge scores improved but self reported adherence marginally improved.

Adherence for Pediatrics: Plenary Adherence for Pediatrics: Plenary Presentation Transcript

  • 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
  • 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
  • Cumulative Pediatric ART Enrollment,
    as of June 2009, N=30,859
    % pediatric patients on ART
  • 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.
  • Proportion of Pediatric Patients (5-15 yrs) with CD4 Count at Baseline, 6, and 12 months after ART Initiation (June 2009 PLD)
  • Cumulative Pediatric HIV Care Enrollment,
    as of June 2009, N =69,575
    % pediatric patients in HIV care
  • 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
  • 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
  • Significant Decrease in LTFU at the 13 ICAP Sites with SOCs Implementation, Sep 07 - Sep 08
    Tene et al. Implementers Meeting 2009
  • 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
  • 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)
    Medication Related Factors
    Healthcare system (Provider-patient/family relationships)
  • Comparing Adherence in HRS and LRS (1)
    Vreeman RC et al Ped Infect Dis J 2008, Simoni J M et al, Pediatrics , 2007
  • Comparing Adherence in HRS and LRS (2)
    Vreeman RC et al Ped Infect Dis J 2008, Simoni JM et al, Pediatrics 2007
  • Comparing Adherence in HRS and LRS (3)
    Vreeman RC, et al., Peds Infect Dis J 2008, Simoni JM, et al., Pediatrics 2007
  • Comparing Adherence in HRS and LRS (4)
    Vreeman RC et al Peds Infect Dis J 2008, Simoni JM et al, Pediatrics 2007
  • 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
    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
  • 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)
  • Why is Pediatric Adherence Difficult?
  • Multiple Factors Affect Adherence and Change Overtime
  • Given all the factors that threaten adherence how can we support and promote adherence in children and adolescents ?
  • Developmental Approach to Pediatric Adherence
  • Developmental Characteristics Affecting Adherence
  • Adherence Cascade
  • Adherence Cascade
    Health Care System/Provider
    Parents, aunts, uncles, grandparents, siblings, peers, friends, foster parents, nanny/house help
  • What are some of the Adherence Challenges you can Expect?
  • How would you Provide Adherence to Care Support?
  • How would you provide Adherence Education and Preparation
  • Adherence Preparation Strategies
  • Other Adherence Preparation Tools
  • 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
  • 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
  • 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
    Social support/community linkages
  • 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
  • Strategies and Interventions to Facilitate Adherence (3)
    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
  • 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
  • S2S-Adherence Support for Adolescents
    Kenya-Pediatric Appointment and Adherence Systems
    Ethiopia- MDT Approach to Adherence
  • 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
  • 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
  • Survey of Adolescent Informed Adolescent Program
    Prior to establishing the adolescent clinic, staff conducted a survey of adolescents in care to determine structure/issues to address in the adolescent clinic
    Adolescents were asked about issues they are facing, what their concerns for the future are and issues they would like to discuss
    Adolescent program formalized in January 2009
    • Provide specialized services for growing number of adolescents who are HIV positive
    • Ensure that patients become well-adjusted adolescents
    • Allow for a less abrupt transition into adult care
    • 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
    • Support and education for parents of HIV positive adolescents
  • Activities to Support Adolescent Adherence
    One on one sessions with a Social Worker
    Groups for adolescents at the Tygerberg Hospital family clinic following routine appointments at pediatric clinic appointments to reduce number of days spent out of school
    Issues discussed:
    • Disclosure
    • Adherence to medication
    • Arts and crafts
    • Life skills/caring for yourself
    • School-related issues
    • Family issues
  • Support for Caregivers
    Support group for caregiver started in June 2008
    • ARV treatment
    • Disclosure
    • Sexuality and sexual abuse
    • Financial issues/fund raising
    • 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
  • Tools and on-site Capacity Building Support
    Clinical mentorship to social workers and lay counselors at CHC and ART clinics on issues related to:
    • Pediatric disclosure
    • Importance of including lay counselors and social workers in MDT
    Promotion of youth-friendly educational material
    • MediKidz comic book on HIV and AIDS
    • Soccer and HIV
    • Hero book
  • Thanks to:
    Sr. Vivian O’Brian
    Sonja Oberholse
    Staff of the Tygerberg Family Clinic
    Patients and their families
    Frida Njogu, MD, MPH
    ICAP Kenya
    Supporting Sustainable Adherence to HIV Prevention, Care & Treatment
    ICAP Technical Workshop
    October 19-22, 2009Kigali, Rwanda
  • 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)
  • Systems To Support Pediatric Adherence
    Appointment system
    Diary integrates appointments and assessment
    Integrated services
    Adherence support tools:
  • Appointment Diary
  • 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
  • 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
  • Colour Coding
  • Plans
    Further and more complete integration of services
    Roll out Color Coding system
    Treatment Supporter system for elderly caretakers
  • 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
  • Adama Hospital
    Located in Adama town
    Adama hospital is a 250-bed regional referral hospital
    The catchment population of the hospital is estimated to be 5 million
    In Adama Town(until September 2009)
    • no of street children= 867
    • no of OVC = 1020
    • no of sexually abused children= 526
  • Adama Hospital
    • In Adama hospital,
    • no of children ever enrolled in care
    = 1411/ 7192(19 %)
    • no of children ever started on ART = 639/3477(18.3 % )
  • Adama Hospital ART Center
  • Adama Hospital ART Center
  • Adama Hospital Pediatric Friendly Clinic
  • Adama Hospital Pediatric Friendly Clinic
  • Cumulative no of Infants & Children Ever Started and Ever Enrolled in Care at Adama Hospital
  • 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
  • Unit for Treatment of Children who need Special Attention
  • ICAP-E and UTCSA Collaboration
    Problems identified in our HIV-infected children
    • Orphanhood
    • Mental health problems
    • Child abuse
    • Homeless
    Collaborate with the psychologist as part of the MDT to meet the special need of the children enrolled in care at Adama Hospital
  • Psychosocial problems referred from ART Clinic
  • Services Provided by the MDT
    • Psychological support
    Child Centered Counseling
    Play Therapy
    Sand box/tray
    Anatomically correct dolls
    Different games.
    • Medical support
  • 8Yrs old child (sexually abused)
  • 14 yrs old child (sexually abused)
  • 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
  • Photo: Lora Iannotti
    Thank You For
    Your Attention