Transcript Slide 1

Examining Adherence Barriers in
Pediatric and Adolescent HIV
Patients – Year Two
Lisa Rubin, Pharm D
Student Candidate
Linda Catanzaro, Pharm D
Clinical Assistant Professor
HIV Pharmaceutical Care Specialist
University at Buffalo
School of Pharmacy & Pharmaceutical Sciences
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Objectives







Provide a brief overview of current HIV/AIDS statistical trends and 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.
Discuss the need for improved HIV education and parenting for foster
parents and caregivers 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/adolescent patient population seen at the PACT
Clinic at Women’s and Children’s Hospital of Greater Buffalo.
Provide case study examples derived from PACT adherence consults to
illustrate situations faced when working with pediatric/adolescent HIVinfected individuals and their families.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
HIV Global Estimates

At the end of 2004, it’s estimated that 2.2 million children
globally under the age of 18 were living with the HIV virus.

640,000 of these cases were diagnosed during 2004 alone.

As many as 90% of these children acquired the viral infection
from their mothers during pregnancy (perinatal transmission) or
through breastfeeding.
http://www.avert.org/children.htm
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
HIV U.S. Estimates



When all 50 states are considered, CDC
estimates that approximately 40,000 persons
become infected with HIV each year.
At least 50% of these cases are in individuals
aged 13-24.
Approximately 1 teenager in the U.S. is
infected with HIV every hour.
http://www.cdc.gov/hiv/stats/hasrlink.htm
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Race/ethnicity of persons (including children) who
received a diagnosis of HIV/AIDS in the U.S., 2003
Based on data from 33 U.S.
areas with longitudinal, namebased HIV reporting.
http://www.cdc.gov/hiv/PUBS/Facts/
At-A-Glance.htm
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
AIDS Rates for Children
<13 Years of Age by Race/Ethnicity - Reported in
2003 - 50 States and D.C.

The rate of AIDS among black children in 2003 was
1.1 (per 100,000)—a rate 11 times higher than
among white children (0.1) and more than 3 times
higher than that of Hispanic children (0.3).

These rates reflect the disproportionate racial/ethnic
distribution of HIV and AIDS.
http://www.cdc.gov/hiv/graphics/images/l262/l262-12.htm
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
HIV Pediatric Estimates in U.S., 2003

Approximately 4,062 cases of HIV-infection were
estimated in the U.S. pediatric population at the end
of 2003.

91% of these cases occurred due to perinatal
transmission, despite advances in preventative
transmission measures in pregnant women.
http://www.cdc.gov/hiv/stats/hasrlink.htm
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Progression From HIV to AIDS

The average duration from the time of initial
HIV infection to the development of AIDS is
about 10 years.

Thus, most young adults or adults living
today with AIDS were likely infected as
children or adolescents.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Patient Quality of Life

The management of
HIV-infected young
children and
adolescents in the
population is critical for
delaying the
progression to AIDS
and for providing these
individuals the
opportunity for the best
quality of life possible.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Effects of HIV on the Body

HIV attacks and weakens the immune
system, making the body susceptible to
opportunistic infections.

Without adequate viral suppression,
progression to AIDS occurs more quickly as
quality of life decreases.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Surrogate Markers for HIV/AIDS

Surrogate markers are measurements
obtained from an individuals blood-work.

Clinicians measure levels of CD4+ T-cells
and HIV-RNA viral copies in the blood to
track the disease progression.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Surrogate Markers for HIV/AIDS
 CD4+
T-cells
Cells
in the immune system for
fighting off infection.
Higher absolute CD4+ counts and
overall % translates into better
immune status of the patient.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Surrogate Markers for HIV/AIDS
 HIV-RNA Viral
Load
 Measures
the amount of virus in the body per
mL of blood.
 Goal of treatment is an “undetectable” viral
load of <50 copies/mL.
 Thus, very low viral loads are indicative of
medication efficacy for patients.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Review:

Goals of Surrogate Marker Measures in
HIV/AIDS Tracking:
 High
CD4+ T-cell counts
 Undetectable HIV-RNA Viral Loads
(<50 copies/mL)

These Goals Help to Suppress Disease
Progression to AIDS.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
HIV Treatment Principles




The HIV virus actively replicates starting from
the time of initial infection.
HIV replication leads to immune damage and
AIDS progression.
HIV viral mutations can occur randomly and
frequently if the virus is allowed to replicate.
Medications can be taken by patients to
suppress viral replication.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
HIV Treatment Principles
 HAART
 Highly




Active Antiretroviral Therapy
The HIV treatment of choice for suppressing
viral load.
Not a cure
Age-specific guidelines for treatment exist
(pediatric and adolescent/adult guidelines)
The first regimen implemented has the best
chance of adequately suppressing the virus.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Goals of HAART





Suppress viral replication
(undetectable viral load <50 copies/mL)
Preserve patient immune status (high CD4+)
Delay disease progression to AIDS
Prevent mortality/morbidity
Improve patient quality of life (QOL)
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Adherence to HAART

Adherence is a complex behavioral process
that’s strongly influenced by both internal and
external factors. It’s composed of how a
patient and/or caregiver judges medication
need versus a variety of other competing
needs, wants, and concerns.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Adherence to HAART

WHY IS ADHERENCE SO CRITICAL?





≥ 95% adherence is needed for adequate viral
suppression (a much greater demand than with other
chronic diseases such as asthma or diabetes).
For every 10% decrease in adherence, there is a 16%
increase in HIV-related mortality.
Just 2 missed days of HAART can lead to increased
viral load and development of mutations.
Viral mutations can lead to HAART resistance.
Once resistance to antiretrovirals develops, it narrows
the future treatment options for the patient.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Adherence to HAART

Many factors play a role in adherence.

Studies have shown that adherence cannot
be reliably predicted based upon
demographic factors (age, gender, race,
religion, occupation, socioeconomic status)
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Pediatric/Adolescent Adherence
 Adherence
in these populations
is of special concern because the
status of the caregiver as well as
the child can affect adherence.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Consequences of Poor Adherence





Incomplete virologic response (not achieving
an undetectable viral load <50 copies/mL).
Risky immunologic response and increased
opportunistic infection susceptibility (low
CD4+ T-cell counts).
Development of viral resistance to HAART.
Decreased medication choices for the future.
Increased risk of progression to AIDS.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Adherence Barriers

Adherence
barriers can be
grouped into
these 3 general
categories:
Patient Specific
Barriers
PatientProvider
Barriers
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Treatment
Barriers
Patient-Specific Barriers to HAART








Lack of knowledge of HAART
resistance and disease
progression.
Lack of belief in the efficacy of
HAART or trust in health care
Prior adherence failure
Lack of self-efficacy/capacity.
Lack of family/social support.
Lack of financial support/limited
access to health care.
Other issues prioritized above
HAART adherence.
Inability to set long-term goals.










Lack of
motivation/forgetfulness.
Alcoholism or substance abuse.
Depression, anxiety, stress, or
other mental illnesses.
Unstable living conditions or
negative life events.
Erratic sleeping/eating patterns.
Lack of organizational and
coping skills.
Lack of HIV status disclosure.
Low perceived QOL.
Feelings of invincibility.
Denial of HIV status.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Pediatric/Adolescent Barriers to HAART

Children with HIV-infection are more
likely to come from families that
experience frequent negative life
events, such as poverty, psychosocial
complications [mental illness/substance
abuse], hospitalization and/or death of
loved ones.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Pediatric/Adolescent Barriers to HAART

Study Finding - Factors most associated with
poor adherence:






poor child caregiver communication
(especially of importance with adolescents, where
medication responsibility is often shared)
high caregiver stress level/caregiver depression
negative stressful life events
low perceived QOL
lack of knowledge of medication resistance
potential
lack of social disclosure
Mellins CA, Brackis-Cott E, Dolezal C, Abrams E. The Role of Psychosocial and Family Factors in Adherence to
Antiretroviral Treatment in Human Immunodeficiency Virus-Infected Children. Pediatr Infect Dis J 2004
November; Vol. 23(11): pp.1035-41.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Knowledge, Capacity, Motivation

Considered 3 pivotal patient-related adherence
factors.

Knowledge – understanding of HIV disease pathology
and the potential consequences of non-adherence.

Capacity – belief in one’s ability to successfully follow a
strict, life-long medication regimen.

Motivation – readiness to incorporate HAART into daily
life and adapt as necessary to maintain full adherence.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
“Readiness to Change”

Readiness to commit to adherence with a
chronic medication regimen can be measured by
progression through 5 “stages of change:”
pre-contemplation
 contemplation
 preparation
 action
 maintenance

© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Pediatric/Adolescent Adherence
 Adherence
in these populations
is of special concern because the
status of the caregiver as well as
the child can affect adherence.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Depression and Adherence

Symptoms of Depression:
Feeling sadness and hopelessness nearly everyday.
 Loss of interest in once pleasurable activities/hobbies.
 Loss of appetite/weight or gain in appetite/weight.
 Disrupted sleeping patterns.
 Agitation and irritability.
 Inability to concentrate or lack of motivation.
 Fatigue.
 Excessive guilt or persistent thoughts about death.
 Possible increased use of alcohol and/or illicit drugs.

© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Depression and Adherence


Research supports a strong and consistent
association between presence of depression
in either the patient or caregiver and
decreased medication adherence.
Mental instability affects memory,
concentration, and motivation, which are all
vital components of adherence.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Depression and Adherence

Depression should
not be viewed as
a consequence of
HIV, but rather as
an independent
disease that
requires separate
treatment.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Depression and Adherence



Premature discontinuation of antidepressant
therapy and counseling services is a major
issue.
It may take 2 – 4 weeks for a patient to see
benefit from antidepressant therapy and/or
relief from side effects.
Successful treatment of depression is key for
subsequent management of HIV-infection.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Alcohol/Substance Abuse & Adherence

Substance dependence/addiction tends to present with
multiple co-barriers to adherence:







Mental instability
Lack of motivation
Lack of coping & prioritizing skills
Lack of family support
Financial instability
Low perceived QOL
Feelings of isolation
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Alcohol/Substance Abuse & Adherence

There exists concern for harmful drug-drug
interactions between recreational drugs and
HAART.

Whether the addiction is present in the
patient or the caregiver, behavioral change
intervention is critical.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
HIV Status Disclosure & Adherence

Many caregivers are reluctant to disclose the HIV
status of children and adolescents directly to them
for several reasons:







Fear of death
Feelings of guilt (especially if perinatal transmission)
Feelings of denial
Fear of inadvertent public disclosure
Fear of discrimination/stigma
Fear of the child’s emotional reaction
Fear of losing custody of the child
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
HIV Status Disclosure & Adherence

Studies, however, have shown that when disclosure
occurs in families living with HIV, both the caregiver
and the child feel less stressed and/or depressed,
and adherence can thus be improved.

Disclosure should be guided by the age,
developmental and emotional stages, and health
status of a child and should be accompanied by
counseling to help the child develop a positive
attitude towards life.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
HIV Status Disclosure & Adherence


All adolescents should know their HIV+
status in order to follow preventative
measures against transmission, especially
for sexually active individuals.
It is regarded an ethical obligation of health
care personnel to disclose to adolescents
their HIV + status.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Patient-Provider Barriers to HAART




Poor healthcare providerpatient relationship, trust,
and communication.
Disparity between beliefs of
the provider and the patient.
Lack of positive
reinforcement from the
provider.
Lack of patient/caregiver
empowerment in health-care
regimen decision-making.



Language/cultural barriers.
Lack of consistent access to
health care (especially of
concern with foster care
youth).
Lack of collaboration
between multiple health
care services
(defragmented health care).
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Patient-Provider Barriers to HAART

Overcoming Communication Barriers:





Ensure that all providers are empathetic and
understanding.
Correct patient’s misconceptions about HIV and
treatment.
Be aware of the cultural background of the household.
Negotiate goals of treatment (include patient and/or
caregiver in the decision-making process).
Reinforce each positive treatment experience.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Patient-Provider Barriers – Foster Care

Foster children often receive inadequate health care
for several reasons:






Poor planning.
Lack of funding (state Medicaid systems rarely cover all the
health care services these children require).
Prolonged waiting for community-based services.
Inadequate training of foster care parents in HIV homecare and health care access.
Lack of coordination between various health care
providers.
Studies show that adolescents who age-out of foster care are
generally poorly prepared for independent living and lack
knowledge of the social services available to them.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Patient-Provider Barriers – Foster Care




Foster youth often see several different health care
providers over the course of various placements.
Maintaining up-to-date medical records or
transferring medical records from location to location
presents a major challenge.
Coordination of health care teams and social
services through improved communication is in the
best interest of the child.
Child welfare workers must be proactive in making
sure all health care services collaborate efficiently.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Patient-Provider Barriers – Foster Care

Improved HIV parenting and training for
foster care parents and respite caregivers in
HIV disease pathology, universal
precautions, and health care access is
important in closing the gap to better health
care for foster youth.
(See directory of HIV/AIDS services)
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Patient-Provider Barriers – Foster Care

Education of adolescent foster care individuals on the
resources available to them will also close the gap to health
care access once these individuals transition into independent
living.







Healthcare Resources
Permanency Planning Resources
Mental Health/Psychosocial Support Resources
School-Based Services
Community-Based Services
Faith-Based Services
Recreational Programs
(See directory of HIV/AIDS services)
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Treatment-Related Barriers to HAART







Pill burden/ dosing regimen
complexity.
Away from home/change in
daily routine.
Difficulty incorporating
medication into daily routine.
Medication side effects/toxicity
concerns.
Formulation (pill vs. powder vs.
liquid) restrictions.
Storage concerns.
Medication taste.







Medication viewed as burden
or constant reminder of disease.
Taking dose at the wrong time.
Drug holidays.
Not following applicable food
restrictions (ex. take on empty
stomach for optimal absorption).
Incorrect dose taken.
Excess dose taken to “make up”
for missed doses.
Filling prescriptions late or not
at all.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Pediatric/Adolescent Barriers to HAART

Study Finding – Three most common
reasons reported for non-adherence:



Forgetfulness.
Away from home/change in daily
routine.
Medication not in possession when
needed.
Murphy DA, Sarr M, Durako SJ, Moscicki AB, Wilson CM, Muenz LR. Barriers to HAART Adherence Among
Human Immunodeficiency Virus-Infected Adolescents. Arch Pediatr Adolesc Med 2003 March; Vol. 157:
pp. 249-55.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Review:
Adherence Barriers
Patient-Related
Patient-Provider Related
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Treatment-Related
Adherence Assessment Methods



Currently, there are no readily available tests
to measure HIV drug levels in the body.
No gold-standard method of adherence
assessment to HAART is currently in effect.
There currently exists a lack of clinical
standardization in adherence assessment of
HAART.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Adherence Assessment Methods
 When
measuring a patient’s
adherence to HAART, it’s
important to “assess”
adherence and not “assume”
adherence.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Adherence Assessment Methods







Caregiver-reports, patient-reports, provider reports.
Pharmacy refill tracking.
Appointment keeping with pharmacotherapy specialists.
MEMS caps (medication event monitoring system caps
that record the day and time for every time a
medication bottle is opened).
Medication knowledge surveys/questionnaires.
Surrogate markers (viral load & CD4+ counts have
been shown to be good predictive measures of
adherence).
Home visits for on-the-spot pill counts.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Adherence Assessment Methods


Of all measures available, provider reports
are the most poorly correlated with actual
adherence rates.
MEMS caps provide an accurate measure of
adherence, yet are expensive and can be
ineffective if patients utilize pillboxes.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Adherence Assessment Methods

No single approach is better than another.

A combination of assessment methods is the
best approach.

It is up to the patient and/or caregiver and
the provider to determine the method that
best fits the patient’s lifestyle.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Adherence Assessment Methods

Issue of Social Desirability
in Assessing Adherence to HAART:

Social desirability is where the patient and/or
caregiver feels the need to report good adherence
when the true level of adherence is inadequate.

Social desirability can jeopardize the usefulness of
assessment tools and the health of the patient.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Adherence Assessment Methods – Modified Morisky Scale
Question
Motivation Knowledge
1) Do you ever forget to take your
medication(s)?
Yes/No
2) Are you careless at times about taking
your medication(s)?
Yes/No
3) Do you sometimes stop taking your
medication(s) if you feel better?
Yes/No
4) Do you sometimes stop taking your
medication(s) if they make you feel worse?
Yes/No
5) Do you know the long-term benefits of
full adherence to your medication(s)?
Yes/No
6) Do you sometimes forget to refill your
medication(s) on-time at the pharmacy?
Yes/No
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Adherence Assessment Methods – Modified Morisky Scale

This medication adherence questionnaire
helps identify any inadequacies in
patient/caregiver knowledge of HIV disease
and motivation to follow full adherence.

Recall knowledge, capacity, and motivation
are 3 pivotal adherence factors that can
predict adherence success.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Adherence Assessment Methods –
Sample Medication Knowledge Survey
Name of
Medication
Why is
it taken
How much
is taken for
each dose
When is
each dose
taken
Where is
the
medication
stored
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
When is
the next
refill date
Any
side
effects
Adherence Assessment Methods

Questions to Ask at Every Patient/Caregiver
Encounter to Assess Adherence:
1) When was the last time you took your
medicine?
2) How many doses have you missed in the last 2
days, 7 days, and 30 days?
3) What were the reasons for any missed
doses?
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Adherence Intervention Tools:








Signed adherence contract
Buddy system
Motivational interviewing,
continued patient education,
adherence follow-ups
Provide incentives ($$, food
vouchers, movie passes,
transportation reimbursement
for appointment keeping, etc)
Directly Observed Therapy
Home visits/pharmacy checks
Pillboxes/MEMS caps
Simplified drug regimen
(compliment patient’s lifestyle,
eating and sleeping patterns)







Psychosocial services
Peer advocates
Multidisciplinary health care
team
Engage family and friends
Verify “state of readiness” in
drug-naïve patients
Disclosure
Reminder cues:
- Calendars and charts
- Wallet cards and diaries
- Alarms, beepers
- Pagers, cell phones, PDAs
- Phone calls, emails
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Adherence Intervention Tools:


http://www.easyreminders.com
http://www.ideamoms.com


Both provide laminated medication reminder charts
http://www.medimom.com

Completely confidential service that utilizes a cell
phone, PDA, pager, or email to remind
patients/caregivers when and how to take medication
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Adherence Intervention Strategies:


Educate patient on HIV disease and consequences of
non-adherence.
Educate patient on medication regimen:









Why medication is needed
Special food restrictions for best absorption
What to do if a dose is missed
Common and serious side effects
What to do for medication refills
Storage considerations
Have patient and/or caregiver “repeat back” instructions
Provide written materials and contact information.
Schedule follow-up appointment.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Adherence Intervention Strategies:

Adolescents often think in concrete terms.

Provide instructions using real-life examples
to help them personalize the information and
always follow-up with written information.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Adherence Intervention Strategies:

There exists a general 4-step collaborative
medication model that is implemented in practice for
the development of good adherence practices:
1) Education
2) Preparation
3) Monitoring
4) Support
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Adherence Intervention Strategies:
1) Education - Identify any potential barriers
to adherence
2) Preparation - Following informed consent
and signing of an “adherence contract,”
create and maintain an empathetic patientprovider or caregiver-provider alliance to
establish open communication and trust.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Adherence Intervention Strategies:
3) Monitoring - Assess level of adherence.
4) Support - Identify strategies or multipletargeted interventions to improve adherence,
and provide support through ongoing followup consults and referrals to available
resources.
(See directory of HIV/AIDS services)
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Review of Adherence
Intervention Strategies:









Start when the patient is ready.
Develop a trusting patient/caregiver – provider relationship.
Treat depression and substance addictions (preferably before initiating
HAART).
Choose a simplified mediation regimen that fits the patient’s lifestyle
and not vice-versa.
Educate the patient on the medication regimen and consequences of
non-adherence. Develop continuing patient-education programs.
Increase support through family, friends, and health care services.
Address barriers to adherence.
Use pillboxes and other medication reminders.
Give positive reinforcement and maintain follow-up appointments.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Custody Planning for Families Living With HIV

Many HIV+ caregivers delay or avoid custody
planning for reasons similar to avoidance of
disclosure:







Fear of death
Feelings of guilt
Feelings of denial
Fear of inadvertent public disclosure
Fear of discrimination/stigma
Fear of the child’s emotional reaction
Fear of losing custody of the child in the present
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Custody Planning for Families Living With HIV

The first longitudinal study (5-years) that observed
custody plans of families living with HIV had these results:





Only 14.5% of 296 HIV-infected parents in the study
maintained a custody plan over the 5-year period.
33% did not plan at all over the 5-year period.
45% of the parents died with no custody plan at the end of
the 5-year period.
Depressed or mentally unstable parents were less likely to
make custody plans.
Parental HIV status disclosure, any substance use,
education level, and ethnicity were unrelated to custody
planning.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Custody Planning for Families Living With HIV





Custody plans typically involved extended-family members
for 65% of families (versus foster care).
Custody planning was less likely in families with only
adolescent-aged children and more likely in families with
children of mixed-ages.
Many families had unrealistic expectations for adolescents
to care for younger siblings.
Adolescents need more support in the transition into
independent living and education on health-care services
available to them.
Custody planning is a critical area of child welfare
intervention.
Rotheram-Borus MJ, Lester P, Wang PW, Shen Q. Custody Plans Among Parents
Living with Human Immunodeficiency Virus Infection. Arch Pediatr Adolesc Med
2004 April; Vol. 158: pp. 327-32.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Custody Planning for Families Living With HIV –
Kinship Care vs. Non-Kinship Care

Pros of Kinship Care:




Sense of familial obligation to provide sound care.
Continuation of cultural and/or spiritual beliefs, which allows
for familiar structure for the child.
Maintenance of a sense of family ties.
Cons of Kinship Care:



Sometimes problems present in the immediate family can
also be present in the extended family (alcoholism, addiction,
financial instability, etc.).
Though a sense of familial obligation may exist, the
resources and capability to provide sound care may not.
Extended family may live out-of-state, pulling child away
from familiar surroundings, friends, etc.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Custody Planning for Families Living With HIV –
Kinship Care vs. Non-Kinship Care

Child welfare and social workers can intervene in the
custody planning process by helping families identify
possible sources of kinship care and determine
whether kinship care will provide the most sound
care for the child.



Does the kinship source have a stable home-life, financial
situation, and sound parenting skills?
Does the kinship source have any psychosocial issues?
Does the kinship source genuinely want to provide care?
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Parents and Children Together (PACT)
The PACT Pediatric/Adolescent
HIV-Infected Patient Population
at the Women’s and Children’s
Hospital of Greater Buffalo
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
The PACT Pediatric/Adolescent
HIV-Infected Patient Population at Women’s and
Children’s Hospital of Greater Buffalo


Total Number of Patients Followed in Year 2
of this project: 28
The age groupings of the PACT population
were as follows:
Ages 5 and under:
2
Ages 6-12:
9
Ages 13-15:
8
Ages > 15 (aging-out): 9
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
The PACT Pediatric/Adolescent
HIV-Infected Patient Population at Women’s and
Children’s Hospital of Greater Buffalo

25 out of 28 patients acquired the HIV virus through
perinatal transmission.

3 out of 28 patients acquired the HIV virus through
heterosexual relations.

0 out of 28 patients acquired the HIV virus through
homosexual relations or IVDU (intravenous drug
use).
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
The PACT Pediatric/Adolescent
HIV-Infected Patient Population at Women’s and
Children’s Hospital of Greater Buffalo




Adherence interviews were held separately for pediatric and
adolescent patients every other week or as needed.
Monthly case conferences were held by the multidisciplinary PACT
health care team (pharmacists, doctors, nurses, psychologists,
counselors, social workers) to discuss specific patients’ progress.
Adherence interventions utilized during year 1 of this study continued
to be implemented, including adherence follow-up questionnaires,
patient-reporting and/or caregiver-reporting of missed doses in the
past 2 days, 7 days, and 30 days along with explanations, pillboxes,
nurse home-visits and phone-call reminders, pharmacy refill checks,
and psychosocial support.
HIV Pharmcotherapy specialists and nurses were available by pager.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
The PACT Pediatric/Adolescent
HIV-Infected Patient Population at Women’s and
Children’s Hospital of Greater Buffalo
Living Situations
17/28 with ≥1
Biological Parent
11/28 with ≥1
Kinship Relative
5/28 with
Foster Parent(s)
3/28 Independent
Living
2/3 has child
(one HIV+
other HIV-)
1/17 has child
(HIV-)
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
The PACT Pediatric/Adolescent
HIV-Infected Patient Population at Women’s and
Children’s Hospital of Greater Buffalo
Documented Depression
Present
in Patient
Present
in Caregiver
Present
in Both
Not Present
or Unknown
14
out of 28
13
out of 28
3
out of 28
4
out of 28
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
The PACT Pediatric/Adolescent
HIV-Infected Patient Population at Women’s and
Children’s Hospital of Greater Buffalo

In addition to depression, 15 out of 28
patients manifest some other psychological
deficit, including ADHD, oppositional
defiance disorder, mental retardation, and/or
a general learning disability.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
The PACT Pediatric/Adolescent
HIV-Infected Patient Population at Women’s and
Children’s Hospital of Greater Buffalo
Documented Alcohol
and/or Substance Use
Present
in Patient
Present
in Caregiver
Present
in Both
Not Present
Or Unknown
6
out of 28
14
out of 28
5
out of 28
4
out of 28
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
The PACT Pediatric/Adolescent
HIV-Infected Patient Population at Women’s and
Children’s Hospital of Greater Buffalo



In terms of family history, 19 out of 28 patients have
a biological parent(s) with a history of
depression/substance use (regardless of whether
these adults are the current caregivers or not).
This number may be an underestimate because data
was not available for all patients on this subject.
This reinforces the general fact that HIV-infected
youth tend to have unstable backgrounds.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
The PACT Pediatric/Adolescent
HIV-Infected Patient Population at Women’s and
Children’s Hospital of Greater Buffalo
HAART Administration
Caregiver
Patient
Both
Not on HAART
10
out of 28
5
out of 28
11
out of 28
2
out of 28
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
The PACT Pediatric/Adolescent
HIV-Infected Patient Population at Women’s and
Children’s Hospital of Greater Buffalo

Adherence was defined as follows:
 good
adherence = missing 0-2 doses/month
 fair adherence = missing 3-5 doses/month
 poor adherence = missing >5 doses/month
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
The PACT Pediatric/Adolescent
HIV-Infected Patient Population at Women’s and
Children’s Hospital of Greater Buffalo
Patient/Caregiver
Reported Adherence
Good
Adherence
Fair
Adherence
Poor
Adherence
18
out of 26
6
out of 26
2
out of 26
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
The PACT Pediatric/Adolescent
HIV-Infected Patient Population at Women’s and
Children’s Hospital of Greater Buffalo


All 6 patients in the fair adherence category
manifest documented cases of depression in
addition to other psychosocial barriers to
adherence.
Lack of disclosure, patient and caregiver
depression, and lack of motivation were the
main concerns for the patients in the poor
adherence category.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
The PACT Pediatric/Adolescent
HIV-Infected Patient Population at Women’s and
Children’s Hospital of Greater Buffalo

The three main reasons given for missed
doses in the fair/poor adherence groups
were:
 Falling
asleep
 Forgetting
 Running out of medication before picking up
refills at the pharmacy
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
The PACT Pediatric/Adolescent
HIV-Infected Patient Population at Women’s and
Children’s Hospital of Greater Buffalo

Reasons Reported for Missed Doses In All Groups:





Did not have medication on hand at the time of
the dose
Too busy at the time of the dose
Disrupted daily routine
Didn’t want to take medication in front of others
Didn’t want to be reminded of HIV status
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
The PACT Pediatric/Adolescent
HIV-Infected Patient Population at Women’s and
Children’s Hospital of Greater Buffalo

The interventions implemented in these
cases were:







Pillboxes
Nurse phone-call reminders/home visits
Pharmacy refill checks
Recommendations for steadier sleeping patterns
Psychosocial support
Steps towards disclosure
Motivational interviewing/ ongoing adherence
assessment appointments
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
The PACT Pediatric/Adolescent
HIV-Infected Patient Population at Women’s and
Children’s Hospital of Greater Buffalo

More time is needed before an accurate
assessment can be made as to the
effectiveness of these interventions
implemented by the PACT team.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
The PACT Pediatric/Adolescent
HIV-Infected Patient Population at Women’s and
Children’s Hospital of Greater Buffalo


Due to the small size of the PACT patient
population, it is difficult to extrapolate data to
the general population.
Case studies derived from patient data in
this population will be used to illustrate what
issues to anticipate and what adherence
strategies to implement in a clinical setting.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
CASE STUDY #1 - History

Patient: 15 year old African American male

Patient became HIV-infected through perinatal transmission.
Patient’s mother had a history of cocaine use and alcoholism; she
died of AIDS in 2003. Father isn’t involved in care (out-of-state).
Patient has been placed in foster care with sister (HIV-) in the past.
Patient’s maternal grandmother, who admits to alcoholism, has legally
adopted patient (and sister) and shares medication administration
responsibilities with the patient.
Patient is clinically depressed and has a history of conduct disorder,
anger mismanagement, and behavioral issues at school. He tests in
the low average range for all academic skills.
Patient has shown good adherence through undetectable viral loads.
There’s concern that the patient has started to experiment with drugs.






© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
CASE STUDY #1 - Assessment








Patient has untreated depression.
Patient is in the “aging-out” transition into the Adolescent Clinic.
Patient is successfully sharing medication responsibility with his
caregiver yet needs preparation for future independent living.
Patient needs anger management and behavioral counseling to deal
with his grief over his mother’s death.
Patient would benefit from peer-supported group discussions.
Patient ‘s drug-use needs to be determined.
Patient’s knowledge of HIV transmission, safe sex measures, and
social services access needs to be determined.
Despite sustained undetectable viral loads, patient’s drug regimen
knowledge needs to be continually assessed.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
CASE STUDY #1 - Assessment

Problems Identified:
–
–
–
–
–
–
–
Untreated Depression/Behavioral Coping
Anger Mismanagement
Learning Disability
Possible Substance Use
Education
Risk Reduction
Health Maintenance/Health Care Access
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
CASE STUDY #1 - Intervention




PACT set up individual weekly counseling sessions, anger management
counseling, as well as group counseling with HIV-infected male peers. His
substance use was determined to be negative but will be continually monitored.
Patient was educated on HIV transmission risks. In addition to after-school
programs he participates in through the Boys’ and Girls’ Clubs, he was
informed of activities available through the YMCA and his local church.
Since patient exhibits good adherence with HAART, his readiness to begin
antidepressant therapy was verified, and an antidepressant medication regimen
was implemented. Patient was counseled on how to take the medication and
what side effects to look for.
A follow-up was scheduled for 1-month to assess the antidepressant regimen.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
CASE STUDY #1 – Follow-Up Tasks




Check-up on patient’s recent pharmacy refills.
Schedule annual dental and eye exams.
Verify the patient’s progress in high school in
a regular classroom setting.
Assess his progress in counseling and if
current antidepressant is successfully
managing his depression.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
CASE STUDY #2 - History

Patient: 20 year old African American female

Patient became HIV-infected through perinatal transmission.
Patient underwent a C-section in 2004. She is the primary caregiver of her
child (born HIV-) and has full responsibility for her own medication regimen.
Patient currently lives on her own and is in-and-out of employment. She
exhibits slight mental retardation and has unrealistic career goals (ex. talks
about becoming a lawyer).
She has an unstable, “hot and cold” relationship with the father of the child.
Patient has major depression and a history of anxiety and opiate abuse.
Patient reports good HAART adherence and that she “loves her meds.” Her
viral load is currently at 107 copies/mL (not at undetectable goal of <50).
Patient has a history of nutritional deficiency.
There’s concern for patient’s ability to handle independent living and
motherhood without compromising HIV management and her health.







© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
CASE STUDY #2 - Assessment








Patient has major depression.
Patient is currently free of substance use but falls into a risk group.
Patient is in an emotionally abusive relationship.
Patient needs training in judgment and problem solving skills.
Patient’s level of disease coping needs to be evaluated.
Patient’s viral load is near goal but not at goal of undetectable. Her
drug regimen knowledge needs to be continually assessed.
Patient’s parenting skills need to be assessed.
Patient’s knowledge of HIV transmission, safe sex measures, and
social service access needs to be determined.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
CASE STUDY #2 - Assessment

Problems Identified:
–
–
–
–
–
–
–
–
–
Depression
Parenting Skills/Coping Skills/Problem Solving Skills
Unstable Relationship
Parenting Support
Learning Disability/Financial Stability
Goal-Setting
Education
Risk Reduction/Risk Behaviors
Health Maintenance/Health Care Access
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
CASE STUDY #2- Intervention






PACT set up individual weekly counseling sessions, peer counseling, and
regular home visits.
Patient has been encouraged to begin setting short-term and long-term goals
for herself, such as sustaining a job, improving adherence to HAART and
antidepressant medications, increasing her motivation, continuing to abstain
from alcohol and substance use, removing herself from an emotionally abusive
relationship, and providing better care and nutrition for her child and herself
overall by utilizing individuals in her established support circle and utilizing
social services (AIDS Community Services, American Red Cross, AIDS Alliance
of Western NY, Child & Family Services, ECMC, Life Transitions Center,
Horizon Health Services, and the Benedict House).
Patient has been encouraged to take parenting day by day.
Patient was educated on HIV transmission risks. The birth control patch does
not protect against STDs/HIV transmission.
Patient has seen a nutritionist through PACT services to educate her on a
healthy diet for herself and her child.
Patient was educated on stress-relieving tactics, such as deep breathing, warm
baths, stretching, soothing music, repetition of a soothing phrase, a diary.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
CASE STUDY #2 – Follow-up Tasks









Check-up on patient’s recent pharmacy refills.
Schedule annual dental and eye exams.
Check-up on her child’s development.
Check-up on patient’s job status and nutritional status.
What goals has she set for herself since the last consult?
Assess patient’s progress in counseling.
Assess patient’s adherence to HAART/antidepressant therapy.
Verify patient’s abstinence from alcohol/substance use.
Schedule follow-up appointment.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
CASE STUDY #3 - History

Patient: 14 year old African American male

Patient became HIV-infected through perinatal transmission.
Patient currently lives with father, a recovering alcoholic (HIV-) with a history of
substance use and depression.
Patient’s mother (HIV+), an active substance abuser, moved out in August of
2003.
Patient diagnosed with major depression in October of 2003. He has been on
antidepressant therapy in the past, with positive results, but discontinued
therapy due to fear of disclosure of his need for antidepressant therapy and
fear of sexual side effects. Therapy was restarted as of February of 2005.
Patient suffers a slight learning disability and has a history of aggressive and
disruptive behavior. He has been suspended from school several times and
was recently arrested on charges of riding in a stolen vehicle and being in
company of others in possession of cocaine.




© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
CASE STUDY #3 - History







There’s concern over father’s threat to give up custody if the patient refuses to
take ownership of his life and avoid negative outside influences.
Father wants patient to stop using his disease as a crutch for his behavior. He
feels the patient needs “tough love.”
Patient disclosed his HIV+ status to school officials in the beginning of 2005
and has felt a sense of discrimination since this disclosure.
Patient is not on HAART therapy. He is currently in the stage of preparation.
Patient denies substance use, but the father believes the patient actively
smokes marijuana.
Patient has a poor sibling relationship with his sister. His sister recently moved
out, though, which has allowed the patient to interact better with his father at
home.
Patient is interested in activities through the Boys’ and Girls’ Clubs but has a
transportation barrier.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
CASE STUDY #3 - Assessment






Adherence to reinstated antidepressant medication needs to be solidified
before starting patient on HAART.
Patient has low CD4+ counts and a high viral load. Although his surrogate
markers remain fairly stable, his immune system is at risk if he doesn’t begin
HAART soon. However, it is more risky to begin HAART if the patient is not
truly ready to accept responsibility and follow complete adherence.
Patient needs to progress from a stage of preparation to one of action in order
to begin HAART to avoid potential hospitalizations and opportunistic infections.
Patient’s knowledge of HIV disease, transmission, and drug resistance potential
along with safe sex measures and social service access needs to be
determined.
Patient needs training in behavioral and coping skills.
Patient’s drug abstinence needs to be verified. His home-life also needs to be
assessed.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
CASE STUDY #3 - Assessment

Problems Identified:
–
–
–
–
–
–
–
–
–
–
Depression
Possible Substance Use
Behavioral Modification
Adherence
Learning Disability
Goal-setting
Education
Initiation of HAART
Risk Reduction/Risk Behaviors
Health Maintenance/Health Care Access
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
CASE STUDY #3 - Intervention




Since February 2005, PACT set up individual weekly counseling sessions
through it’s own services as well as AIDS Community Services and has also
begun bimonthly peer counseling. Patient has shown positive feedback from
peer-to-peer support.
An ACS educator made several home visits to reinforce the patient’s knowledge
of HIV disease, the consequences of lack of drug therapy, the goal of
undetectable viral load levels once drug therapy begins, and the consequences
of non-adherence. Patient reported feeling “stupid” because there was so
much he was unaware of.
Antidepressant therapy has been reinstated, and the patient’s mood and
demeanor have greatly improved. Patient reports increased energy and
decreased agitation. Patient has been given a pillbox and educated on the
importance of depression management before starting HAART. A PACT nurse
has made regular home visits and phone-call reminders.
Currently looking into transportation services through the Boys’ and Girls’ Clubs
and/or the YMCA for future after-school programs.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
CASE STUDY #3 – Follow-Up Tasks





Check-up on patient’s recent pharmacy refills for his
antidepressant medication.
Assess patient’s progress in counseling/motivational
interviewing.
Verify patient’s and father’s abstinence from substance
use.
Verify patients plans for high school and whether
resource classes will be provided.
Schedule follow-up appointment to assess motivation and
capacity level to begin HAART.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Useful Link:

A very comprehensive listing of area
resources, publications, and internet links:
http://aidsnetwork.net/
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation
Conclusion

Adherence is a collaborative process
between a patient and/or caregiver and a
multidisciplinary health care team. The
patient and/or caregiver should be provided
with continuing support, adherence
education, motivation, and confidentiality in
order to be empowered participants in the
health care and disease management
process.
© 2004-2005 CDHS College Relations Group
Buffalo State College/SUNY at Buffalo
Research Foundation