Examining Adherence Barriers in Pediatric and Adolescent HIV
Patients – Year Two
Powerpoint Presentation Training Notes on HIV/AIDS Adolescents and
Independent Living
Lisa Marie Rubin, Pharm.D. Student
Linda Catanzaro, Pharm.D., Clinical Assistant Professor
State University of New York at Buffalo, Dept. of Pharmacy Practice
Meg Brin, Child Welfare Administrative Director
Michelle Barbarossa, Child Welfare Trainer
Chelly Coyle, Independent Living Trainer
RC01.01 Independent Living Network Training and Technical Assistance
Funding for this research project was provided by NYS Office of Children and Family
Services, Contract year 2004: Project 1037122, Award: 31183; Contract year 2005:
Project 1044698, Award 34851, through the Center for Development of Human Services,
College Relations Group, Research Foundation of SUNY, Buffalo State College.
© 2004-2005 CDHS College Relations Group Buffalo State College/SUNY at Buffalo Research Foundation
Abstract
Since the administration of HAART (highly active antiretroviral therapy) became
widespread in the U.S. as of 1996, HIV-infected individuals are living longer, more
productive lives. However, with this advance has come a plethora of new issues of
concern, including disclosure of HIV status in a society where it’s generally stigmatized,
transition from childhood into adulthood while managing a chronic, incurable disease,
adjusting one’s lifestyle to incorporate a life-long, daily medication regimen, and the
need for near perfect adherence to adequately suppress the virus, maintain undetectable
viral loads, and protect the immune system from preventable opportunistic infections.
Patients on HAART or who are ready to begin HAART encounter many barriers
to adherence from day-to-day. This is especially of concern in pediatric and adolescent
populations, where the patients are often not solely responsible for their health care.
Thus, the HIV education of social workers, foster parents and other caregivers, and health
care workers in general, is a critical link in the comprehensive therapeutic management of
HIV-infected individuals.
This power-point presentation and accompanying training manual will be
incorporated into a child-welfare core-curriculum training seminar to provide
caseworkers, social workers, and patient caregivers a more thorough understanding of the
specific adherence barriers that are most prevalent in pediatric/adolescent HIV-infected
populations as well as specific interventions that can be most effective in overcoming
these barriers.
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Objectives:
• Provide a brief introduction with current HIV/AIDS statistical trends and a brief
overview of how HIV viral activity is followed clinically.
• Discuss the importance of HAART (highly active antiretroviral therapy),
adherence to HAART, and potential barriers to adherence in pediatric/adolescent
populations (including depression, substance abuse, lack of disclosure, unstable
living conditions, lack of health care access/continuity of care, and foster care).
• Discuss the need for improved HIV education and parenting for foster parents
and the need for improved access to comprehensive health care for foster youth
• Discuss methods used to access adherence and strategies used to improve
overall adherence.
• Discuss the importance of custody planning in families living with HIV.
• Describe the pediatric and adolescent patient population seen at the PACT
(Parents and Children Together) Clinic at the Women’s and Children’s
Hospital of Buffalo during the 2nd year of this observational study.
• Provide case study examples derived from PACT adherence interviews to
illustrate situations social workers/caregivers will face when working with
pediatric/adolescent HIV-infected individuals in the community.
Please see the final report and power-point presentation from year 1 of this ongoing project
for a detailed description of the HIV infection, including transmission, diagnosis, effects of
the virus on the body (opportunistic infections) when not adequately suppressed and
controlled with HAART, and the available drug classes utilized in HAART.
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Slide-By-Slide Review:
Slides 1-2:
• Title slide and objectives outlined.
Slides 3-7: Statistics
• The latest statistics on AIDS & HIV both globally and in the U.S. are given.
The next set of statistics is due out in December of 2005.
• These slides provide specific statistics about HIV cases and diagnoses in
younger populations both globally and within the U.S.
• The disproportionate racial/ethnic distribution of HIV/AIDS is illustrated as
well as the increasing incidence in the 13-24 age range.
Slide 8: Progression from HIV to AIDS
• There’s in general a 10-year gap between HIV diagnosis and AIDS
progression. Younger age groups need transmission prevention education, and
pregnant women need more education on HIV testing and prophylaxis,
regardless of symptom presence.
Slide 9: Patient Quality of Life
• HIV drug therapy is aimed at improving patient quality of life (QOL).
Slide 10: Effects of HIV On the Body
• HIV virus weakens the immune system, making the body susceptible to
other opportunistic infections. The progression to AIDS occurs when the
immune system is at a dangerously susceptible state. Quality of life typically
begins to decrease at this point, if it hasn’t already.
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Slides 11–14: Surrogate Markers for HIV/AIDS
• Clinicians measure CD4+ T-cell counts and HIV viral loads in the blood to
determine disease progression. These measures also help to indicate if a drug
therapy regimen is working for a patient.
• The goal is for a patient to have high CD4+ T-cell counts and very low viral
loads (once the viral load gets to <50 copies/mL it is considered undetectable,
which is treatment goal).
• Higher CD4+ percentages indicate better immune function. Low viral loads
indicate that the virus is being suppressed from replicating and that resistance
development is limited.
• Once a patient’s CD4+ count drops below 200, that patient is clinically
diagnosed with AIDS, even if the CD4 count rises thereafter.
Slides 15-16: HIV Treatment Principles
• HAART (highly antiretroviral therapy) is the drug therapy used to suppress,
not cure, the HIV virus and delay progression to AIDS for as long as possible.
• There are age-specific guidelines for pediatric and adolescent/adult
populations concerning when to start HAART, what drug regimens to use, and
how to monitor treatment response.
• The first HAART regimen implemented in an HIV-infected patient has the
greatest capability of suppressing the virus and improving patient QOL.
Slides 17: Goals of HAART
• Maintaining high CD4+ counts and percentages
• Maintaining an undetectable viral load <50 copies/mL
• Delaying progression to AIDS and preventing mortality/morbidity
• Improving patient QOL
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Slides 18-21: Adherence to HAART
• Adherence is affected by many internal and external factors. If the patient is
of a pediatric/adolescent age, risk factors present in the caregiver as well as the
patient can affect adherence.
• ≥ 95% adherence is considered adequate for managing HIV. Thus, near
perfection is the goal.
• Demographic factors do NOT predict adherence.
Slide 22: Consequences of Poor Adherence
• If inadequate levels of antiretroviral drugs are in the body due to poor
adherence, then the virus has the chance to replicate and mutate. Mutations
make the virus resistant to drug therapy. Thus, the patient no longer
benefits from that particular drug-regimen. Cross-resistance can occur with
other drugs. This jeopardizes the patient’s health because it limits the choices
of drugs to use and increases the risk of quicker AIDS progression.
Slide 23: Adherence Barriers
• Patient-specific barriers
• Patient-provider barriers
• Treatment barriers
Slide 24: Patient-Specific Barriers to HAART
• Comprehensive listing of adherence barriers in this category that social
workers, caregivers, and health care personnel will face
Slide 25-26: Pediatric/Adolescent Barriers to HAART
• Children living with HIV in general have unstable family backgrounds and
often experience more negative life events than children not living with HIV.
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• Slide 26 highlights the patient-related adherence barriers that one clinical
trial found to be most indicative of poor antiretroviral adherence.
Slides 27: Knowledge, Capacity, Motivation
• These are 3 key factors that predict adherence in a patient and should be part
of the focus of multifaceted intervention strategies to improve adherence.
Slide 28: Readiness to Change
• The TREAT (Therapeutic Regimens Enhancing Adherence in Teens)
Program is an 8-week intensive prep program, ideally for drug-naïve HIVinfected adolescents, which prepares them for life-long medication adherence.
The goal is to progress patients through 5 stages of change:
pre-contemplation, contemplation, preparation, action, and maintenance.
This program is still under clinical trial but has already been implemented in
the clinical setting as a predictor and useful measure of patient-readiness to
start HAART.
Slide 29: Pediatric/Adolescent Adherence
• These populations tend to rely fully or partially on caregivers for medication
administration. Thus, the status of the caregiver has a direct effect on the
patient’s well-being. Adherence is of special concern in pediatric/adolescent
populations for this reason.
Slides 30-33: Depression and Adherence
• Slide 30 outlines the common symptoms that child welfare workers and
caregivers should be trained to look for in HIV-infected children.
• Research has consistently concluded that presence of depression in the
patient and/or caregiver, if left untreated, compromises full adherence to
HAART.
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• Depression is often assumed to be a consequence of HIV diagnosis. True it
may result from this, but it may have also been present before diagnosis.
Patients should not have to feel as though depression is an inevitable
consequence they must deal with. Depression should be treated as a
separate disease from HIV and should receive its own treatment protocol.
Continuation of antidepressant therapy is key.
• It should be stressed that antidepressants can take from 2-4 weeks to have a
beneficial effect, depending on the patient. Proper management of depression
will allow for more diligent adherence to HAART.
Slides 34-35: Alcohol/Substance Abuse and Adherence
• Alcoholism and or substance addiction/abuse, whether present in the patient
and/or caregiver, can compromise medication adherence.
• Oftentimes, untreated depression can lead into substance use, which
reinforces the need for effective mental status management.
• Behavioral intervention and coping support are key interventions for treating
substance addiction/abuse.
Slides 36-38: HIV Disclosure & Adherence
• Families who disclose children’s HIV status to them experience less
stress and depression overall, which thus helps with adherence.
• Patients who disclose their HIV status at school also show higher rates of
adherence because they can confidentially take their medications during the
school-day. Thus, training of school personnel, especially in public-schools,
in universal precautions and confidentiality issues is critical.
• All adolescents should be informed of their HIV status in order to take
necessary precautions to prevent transmission. It is regarded as an ethical
obligation of all involved health care personnel to disclose HIV status to
adolescents.
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Slides 39-40: Patient-Provider Barriers to HAART
• Slide 39 is a comprehensive listing of adherence barriers in this category that
social workers, caregivers, and health care personnel will face.
• Slide 40 lists important ways to overcome patient-provider communication
barriers.
Slides 41-44: Patient-Provider Barriers – Foster Care
• Foster care children/adolescents in general receive poor health care,
even though these individuals tend to have greater heath care needs and
demands compared with youth not in foster care placement.
• Two of the main reasons for this lack of adequate health care is lack of
proper education provided to foster care parents and lack of collaboration
between various health care and social services utilized by foster
children/adolescents.
• Child welfare workers can intervene in this area by working to coordinate all
the services utilized by foster youth and making sure health records stay up-todate. Do not rely on foster parents to keep immunizations up-to-date.
Provide more comprehensive HIV education and parenting training to foster
parents before placement occurs.
Slides 45-47: Treatment-Related Barriers to HAART
• Slide 45 is a comprehensive listing of adherence barriers in this category that
social workers, caregivers, and health care personnel will face.
• Slide 46 reviews the three main treatment-related adherence barriers reported
by one of a few clinical trials that have studied adherence in HIV-infected
adolescents: forgetfulness, change in daily routine, and medication not on
hand when needed.
• Slide 47 reviews the 3 main categories of medication adherence barriers.
• Child welfare workers should maintain communication with medical/clinical
staff and pharmacists and stay educated on specific requirements needed for a
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patient’s medication regimen (ex. food restrictions, timing, how to handle
missed doses, etc.) so that unforeseen barriers can be dealt with quickly.
Slides 48-53: Adherence Assessment Methods
• There is no gold-standard for assessment of treatment to HAART currently
employed in clinical practice (lack of standardization).
• Slide 50 lists various methods of adherence assessment utilized in clinical
practice. Surrogate marker measures (CD4+ and viral load measures) have
been shown to be good measures of adherence and good predictors of patient
reliability.
• Implementation of a combination of assessment measurements is best.
• Social desirability is where the patient and/or caregiver feels the need to
report only good adherence, even when it’s not the truth. There exists a
pressure to report only what they feel staff wants to hear. Thus, it decreases
patient and/or caregiver reliability and ultimately can compromise patients’
health and well-being.
Slides 54-55: Adherence Assessment Methods – Modified Morisky Scale
• Slide 54 illustrates what the assessment survey looks like.
• The main purpose of this survey is to assess the patient’s level of HIV
knowledge and motivation to either begin HAART or continue adherence to
HAART. It reinforces the importance of the knowledge, capacity, and
motivation as important tools in monitoring medication adherence.
Slides 56-57: Sample Adherence Assessment Tools
• These two slides illustrate samples of ways to assess a patient’s adherence at
follow-up appointments.
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Slides 58-59: Adherence Intervention Tools
• A comprehensive listing of intervention strategies to improve patient
adherence, including websites that provide useful resources. Many of these
strategies are implemented by PACT.
• Pillboxes and calendars can be purchased at drugstores and mass
merchandiser stores/supermarkets. Also, most clinics have pillboxes in stock.
Slides 60-65: Adherence Intervention Strategies
• 4-step collaborative medication model is often used to develop good
adherence practices: education, preparation, monitoring, support. It should be
implemented in conjunction with patient progression through the 5 stages of
change outlined in slide 28.
• Patient/caregiver active involvement in medication adherence assessment
and adjustment is key to creating empowered individuals who personalize
medication regimens and effectively incorporate them into their everyday
lives. This means improved adherence!
• Do not talk down to patients or get into a habit of “telling” them to follow
adherence. Always give positive reinforcement when applicable.
Slides 66-68: Custody Planning for Families Living With HIV
• The results of the first longitudinal clinical trial to assess the custody plans
for families living with HIV over a 5-year period are reviewed.
Slides 69-70: Custody Planning– Kinship Care vs. Non-Kinship Care
• The pros and cons of kinship care are outlined, as opposed to foster care,
which carries its own set of benefits and drawbacks as outlined in previous
slides.
• The role of child welfare and social workers in regards to custody planning
is outlined.
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Slides 71-88: PACT HIV-Infected Pediatric/Adolescent Patient Population
• The PACT patient population (n=28) is broken down according to several
variables, including age, method of HIV transmission, living situation,
depression and/or substance addiction present in the patient and/or caregiver,
family history of depression and/or substance addiction, person(s) in charge of
medication administration, and level of patient/caregiver reported adherence
(good, fair, poor).
• The PACT clinic is described briefly in slide 74, including appointment
scheduling and adherence interventions utilized.
• Aside from the fact that depression was evident in all cases of reported
fair/poor adherence and substance use/abuse was evident in nearly all cases
seen by PACT (thus psychosocial barriers are a crucial area in need of
intervention), no generalizations can be made from the gathered PACT data
for the general populations because our patient population was so small.
Slides 89-93: Case Study #1
• These case studies are presented in a format that caseworkers, social
workers, and health care personnel should approach all patient cases: history,
assessment, intervention, results, follow-up.
• The various principles illustrated in case study #1 are shown on slide 90.
• This case illustrates the importance of depression/mental illness treatment
and children’s need for coping skills when they experience a negative life
event, such as the death of a parent or other family member. Also illustrated is
the need for ongoing education concerning HIV disease, transmission
prevention, and social service access.
• Not all children with a history of depression/substance use exhibit poor
adherence; they still fall into a risk group though. There exists a need for
continual adherence assessment regardless of current level shown. Adherence
is an ongoing process that requires ongoing maintenance and follow-up.
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Slides 94-98: Case Study #2
• This case study illustrates the need for greater support for patients in
independent living situations, the need for positive surrounding relationships
and support circles, the need to set both short-term and long-term goals, and
the ever-present need for ongoing HIV education and transmission prevention.
• Many HIV+ mothers are able to have children who are HIV- thanks to
advanced medical care today. However, the responsibility of parenting a child
(especially as a single mother) in addition to the responsibility of managing a
chronic disease like HIV is a huge task. HIV+ mothers are a special
population that greatly utilize social services for help with baby food and
supplies, day-care, parenting skills, etc.
Slides 99-104: Case Study #3
• This case study illustrates the need for properly treated depression,
patient state of readiness, and progression to the stage of “action” before
initiation of HAART is appropriate, and HIV education. Other issues touched
upon are help coping after a negative life event (mother moving out and giving
up custody), effects of exposure to parental substance abuse, HIV disclosure,
effects of an unstable home-life/sibling rivalry, and transportation issues that
prevent involvement in productive activities that would help to avoid
mischievous circumstances.
• Adherence failure in the past is a risk factor but not a concrete measure of
future adherence failure. With proper steps in preparing a patient mentally for
life-long, strict adherence, it is possible to change behaviors and instill the
motivation to follow complete adherence. It requires patience and continual
efforts on the part of child welfare workers and medical personnel.
• In addition to the patient’s mental stability, the caregiver’s mental stability is
also important to assess because if left unchecked, it will eventually effect the
child’s welfare and potentially hinder further progress in the path to perfect
adherence.
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Slide 105: Useful Link
• A comprehensive resource for HIV information and training materials.
Slide 106: Conclusion
• Adherence should be approached as an ongoing collaborative process
between the patient and/or caregiver and the entire health care team/social
service team involved.
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