Understanding and Improving Adherence to HIV Treatment

1
Understanding and ImprovingAdherence to HIV
Treatment

• Tiffany Chenneville, Ph.D.
• Idia Binitie, M.A.
• Sarah Tarquini, M.A.
• University of South Florida
• Department of Pediatrics

2
Disclosure of Financial Relationships

• This speaker has no significant financial
  relationships with commercial entities to
  disclose.

This slide set has been peer-reviewed to ensure
that there areno conflicts of interest
represented in the presentation.
3
Operational Definition

• A persons behavior in relation to a prescribed
  medical regimen, which may include
• Keeping appointments
• Taking medication
• Following a prescribed diet
• Executing other lifestyle changes

4
Existing Literature on Adherence

• Primary focus is
• Adults with HIV
• Pediatric illnesses other than HIV (e.g., asthma,
  diabetes)
• Research on adherence among children and youth
  with HIV is still developing
• To date, much of the research is observational in
  nature (e.g., examining predictor variables)
• Few intervention studies

5
Importance of Adherence

• Prognosis
• Preserve/restore immune function
• Suppress viral load
• Decrease morbidity
• Prevent death
• Improve quality of life

6
Predictors/Barriers
Wills, 2006 Balfouret al., 2007 Hosek, Harper,
Domanico, 2005 Lee Johann-Liang, 1999
Murphy et al., 2001 Martinez et al., 2000
7
Developmental Issues

• Age
• Biological development
• Cognitive Development
• Social-emotional development
• Responsibility

8
Caregiver/Family Characteristics

• Knowledge and problem solving
• Psychosocial adjustment
• Family relationships

Steele et al., 2001
9
Health Care/Other Systems

• Doctor-Patient Relationship
• Rapport
• Effective communication
• Access to Services/Convenience
• Funding
• Transportation
• Scheduling

Saylor et al., 1990
10
Disease Characteristics

• Treatment complexity
• Consequences of treatment
• Positive
• Negative
• Asymptomatology
• Effect on motivation

Blowev et al., 1997 Goode et al., 2003 Boni et
al., 2000 Byrne et al., 2002
11
Developmental Framework forUnderstanding
Adherence

• Piagets Theory of Cognitive Development
• Stages of cognitive development
• Sensorimotor (birth to 2 years)
• Preoperational (2-7 years)
• Concrete operational (7-11 years)
• Formal operational (11 years )
• Need to present information in developmentally
  appropriate manner
• Eriksons Theory of Psychosocial Development
• Huitts Systems Theory (aka Transactional Model)
• Builds upon Brofenbrenners Ecological Systems
  Theory

Kail, 2004
12
Huitts Systems Theoryaka Transactional Model
Graphic retrieved from http//chiron.valdosta.edu/
whuitt/materials/sysmdlo.html
13
Responsibility forIllness Management

• Who is responsible for illness management?
• The patient, parent/guardian, or other caregiver?
• Are responsibilities shared? If so, how?
• Dependent variables
• Age(children vs. adolescents vs. young adults
  vs. older adults
• Health status(stabilized HIV disease vs. end
  stage AIDS)
• Important implications for adherence
  interventions

14
Assessing Adherence

• Accurate assessment vitally important
• Clinical care and research
• Factors to consider
• How are you defining a missed dose?
• Who is reporting adherence?
• What measures should be used?
• Clinical vs.
• Research

Golin et al., 2002 Sankar et al., 2007 Wagner,
2002 Halkitis et al., 2003 Murphy et al., 2000
15
Clinically Relevant Measures

• Child/adolescent and Parent Report
• Behavioral Observations
• Self monitoring
• Drug Assays
• Pill Counts
• Pharmacy Refills
• Monitoring Devices

LaGreca Bearman, 2003
16
Quality of Life

• Definition
• The value given to the duration of life as
  modified by the impairments, functional states,
  perceptions, and social opportunities influenced
  by disease, treatment, and health care delivery
  (Patrick Erickson, 1993).
• Reflects the patients subjective evaluation of
  his/her daily functioning and well-being
• Domains
• Sensory, physical, emotional, cognitive,
  self-care, levels of pain/discomfort, sexual
  functioning, self-disclosure, stigma, and body
  image (Robinson, 2004)

17
Quality of Life

• Relevance to Adherence
• Adherence to any given regimen involves
  acost-benefit analysis
• Relationship between QoL and adherence to HAART
  (Penedo et al., 2003)
• Assessment of Health related Quality of Life
• Measures of QoL
• Youth, parent, adult measures
  (http//www.qolid.org/proqolid)

18
Medication Readiness

• Importance of assessing readiness and willingness
  recognized (www.hivatis.org)
• Research on readiness
• Only 50 of patients ready to begin ART
  immediately after diagnosis (Morgenstern et al.,
  2002)
• Barriers to beginning ART
• Desire to conceal HIV status
• Funding
• Homelessness

19
Medication Readiness

• Measures
• General measure
• Index of Readiness (IR) - 30 items, 3 subscales
  (Fleury, 1994)
• Revaluation of lifestyle
• Identification of barriers/creating strategies
• Goal commitment
• Specific measure HIV Medication Readiness Scale
  (HMRS)-10 items (Balfour et al., 2007)

20
HIV Medication Readiness Scale (Balfour et al.,
2007)

• If you were to start taking HIV pills today, how
  ready would you be to (on a scale of 0-4 with 0
  being not at all ready and 4 being very
  ready
• 1. Make the necessary changes in your diet (i.e.,
  eat at regular times, take pills with certain
  foods)
• 2. Accept the idea of taking these HIV pills for
  a long time (e.g., years)
• 3. change your work, school, or home schedule to
  help you take your HIV pills (e.g., take a lunch
  break)
• 4. Deal with bringing your HIV pills to social
  activities (e.g., restaurants, friends house)
• 5. Take many pills (e.g., more than 10), several
  times a day, at specific times
• 6. Ask for support from friends or family to help
  you remember to take your HIV pills
• 7. Live less spontaneously because you have to
  take your HIV pills at specific times (e.g.,
  having to go home first to take your HIV pills
  before going out)
• 8. Wear a watch or carry a beeper to remind you
  to take your HIV pills
• 9. Have a regular bedtime and morning wake-up
  time so as not to forget to take your HIV pills
• 10. Continue taking your HIV pills even if you
  experience unpleasant side effects (e.g.,
  vomiting, diarrhea, change in body shape)

21
Legal, Ethical, Moral Considerations

• Belmont Report as Framework
• Research-driven, but clinically relevant
• Principles
• Respect for Persons (autonomy)
• Beneficence (maximize benefit, minimize harm)
• Justice (equality)
• Acknowledge Autonomy
• Can/should we project our desires onto our
  patients?
• Difference between empowering and imposing
• Protect Patients with Diminished Autonomy
• Decisional capacity

The Belmont report Ethical principles and
guidelines for the protection of human subjects
of research. (1979)
22
Decisional Capacity and Adherence

• Components of Decisional Capacity
• Understanding
• Hearing does not equate to understanding
• Appreciation
• Lack of appreciation for illness may negatively
  affect adherence
• Reasoning
• Limited judgment and reasoning abilities may
  negatively affect adherence
• Ability to express a choice
• Recommendations

Grisso Appelbaum, 1998 Grisso, Appelbaum,
Hill-Fotouhi (1997)
23
Theories of Behavior Change

• Transtheoretical Model of Change (TTM) (Prochaska
  DiClemente, 1986)
• Health Belief Model (Janz Becker, 1986)
• Wellness Motivation Theory (Fleury, 1996)
• Only model that explicitly includes readiness
  for change

24
TTM/Motivational Interviewing

• TTM
• Stage of change determines success or failure to
  achieve a proposed behavior change
• Motivational interviewing (MI)
• Overview
• Client-centered counseling approach
• Help patients progress through the various stages
  of change
• Explore ambivalence
• Principles
• Express empathy, develop discrepancy, roll with
  resistance, support self-efficacy
• Stages of change
• Measure
• 2-item measure (Willey et al., 2000)

25
TTM/Motivational Interviewing

• Stages of change
• Precontemplation
• Contemplation
• Preparation
• Action
• Maintenance

26
Health Belief Model (HBM)

• Health behaviors dependent on
• Desire to avoid illness to get well
• Belief that particular act (e.g., taking
  medication) will prevent or relieve illness
• Dimensions
• Perceived susceptibility, severity, benefits,
  barriers, and cues to action and other specific
  variables
• HBM applied to HIV (Malcolm et al., 2003)
• Relationship between adherence and belief in
  medication efficacy (90-100), trust in primary
  provider, and motivation to stay healthy

Janz Becker, 1984 Malcolm et al., 2003
27
Wellness Motivation Theory

• Framework for understanding
• the continuous process of initiating health
  behavior (e.g., starting medication)
• how the behavior is sustained over time (e.g.,
  adhering to medication regimen)
• 3 stages
• 1. Appraising readiness
• 2. Changing
• 3. Integrating change

Fleury, 1996 Balfour et al., 2007
28
Value and ConfidenceImportant Across Models

• VALUE
• Why should I take medication?
• Is it worth the risks/side effects?
• How will I benefit if I take medication?
• What will change if I take medication?
• Do I really want to take medication?
• Will taking medication make a difference?

• CONFIDENCE
• Can I take medication?
• Can I swallow pills?
• Can I remember to take medication?
• How will I do it?
• How will I cope with the side effects?
• Will there be a change in my health?

29
Decisional BalanceImportant Across Models

• 
  Benefits/Pros Costs/Cons
• Taking
• Medication
• Not Taking
• Medication

30
General Intervention Strategies

• Educational Strategies
• Psychoeducational strategies
• Focus on benefits of adherence
• Provide explicit, written recommendations and
  ensure understanding

LaGreca Bearman,2003 Spirito Kazak, 2006
31
General Intervention Strategies

• Organizational strategies
• Policies and procedures within healthcare
  system(i.e., clinic)
• Medical supervision
• DOT, home visits, frequent clinic visits,
  hospitalization(in extreme cases)
• Reduce barriers to adherence
• Provide transportation to appointments
• Discuss strategies to manage side effects before
  they occur (ex manual of symptom management-Tsai
  et al, 2005)

32
General Intervention Strategies

• Behavioral strategies
• Monitoring of thoughts, feelings, and regimen
  behaviors
• Behavior modification strategies (e.g., positive
  reinforcement, reward system/incentives,
  contracting)
• Model positive coping behaviors (e.g.,
  caregivers, medical providers)
• Model medication management strategies (e.g.,
  properly filling pill boxes)
• Teach patients to use relaxation techniques
• Teach problem-solving skills
• Visual cues and reminders
• Timers, signs, prompts, phone calls, programming
  phone reminders, pairing medication with
  well established behaviors such as tooth brushing
• Self-monitoring
• Calendars and daily diaries

LaGreca Bearman, 2003 Thomason, Bachanas,
Campos, 1996 Casey et al., 1985 Matter et al.,
1975 Lowe Lutzker, 1979 Greenan-Fowler et
al., 1987
33
General Intervention Strategies

• Cognitive-behavioral strategies
• Behavioral component (see strategies listed
  above) AND
• Cognitive component
• Focus on creating positive thoughts about HIV and
  treatment
• Teach patients to use positive self talk
• Help patients master their anxiety, fears,
  grief about HIV and treatment
• Ensure a developmentally appropriate
  understanding of HIV and compliance with
  medications

Adapted from LaGreca Bearman, 2003 Thomason,
Bachanas, Campos, 1996
34
General Intervention Strategies

• Family interventions
• Peer interventions
• Multicomponent interventions

Satin et al., 1990 Anderson et al., 1989
35
HIV/AIDS Specific Interventions

• Pediatric/Adolescent
• Modifying techniques with adolescents
• Disclosure
• Communication skills training
• Normalizing adolescent rebellion
• Assisting with role transitions
• Teaching family problem-solving skills
• Adults

LaGreca, A.M. Bearman, K.J. (2003) and Spirito,
A. Kazak, A. E. (2006)
36
Interventions Based on TTM/MI
Adapted from Willey et al., 2000. Stages of
change for adherence with medication regimens for
chronic disease Development and validation of a
measure. Clinical Therapeutics, 22, 7, 858-871.
37
Current and Future Directions

• Seeking funding through the USF Collaborative for
  Children, Families, and Communities
• Adherence protocol for our program
• Decision tree approach
• Consistent assessment measures
• Medication readiness
• Assessing adherence

38
References

• Balfour, L., Tasca, G.A., Kowal, J., Corace, K.,
  Cooper, C.L., Angel, J.B. et al. (2007).
  Development and validation of the HIV medication
  readiness scale. Assessment, 14, 408-416.
• Cunningham, P. B., Naar-King, S., Ellis, D. A.,
  Pejuan, S., Secord, E. (2006). Achieving
  adherence to antiretroviral medications for
  pediatric HIV disease using an empirically
  supported treatment A case report. Journal of
  Developmental and Behavioral Pediatrics, 27,
  44-51.
• Dolezal, C., Mellins, C., Brackis-Cott, E.,
  Abrams, E.J. (2003). The reliability of reports
  of medical adherence from children with HIV and
  their adult caregivers. Journal of Pediatric
  Psychology, 28 (5), 355-361.
• Fleury, J. (1994). The Index of readiness
  Development and psychometric analysis. Journal of
  Nursing Measurement, 2, 143-154.
• Fleury, J. (1996). Wellness motivation theory An
  exploration of theoretical relevance. Nursing
  Research, 45(5), 277-283.
• Golin, C., Liu, H., Hays, R., Miller, L., Beck,
  C., Ickovics, J., et al. (2002). A prospective
  study of predictors of adherence to combination
  antiretroviral medication. Journal of General
  Internal Medicine, 17, 756-765.
• Grisso, T. , Appelbaum, P.S. (1998). Assessing
  competence to consent to treatment. NY Oxford
  University Press.
• Grisso, T., Appelbaum, P.S., Hill-Fotouhi, C.
  (1997). The MacCAT-T A clinical tool to assess
  patients capacities to make treatment decisions.
  Psychiatric Services, 48 (11), pp. 1415-1419.
• Halkitis, P., Parson, J., Wolitski, R., Remien,
  R. (2003). Characteristics of HIV antiretroviral
  treatments, access, and adherence in an
  ethnically diverse sample of men who have sex
  with men. AIDS Care, 15, 89-102.

39
References

• Hosek, S.G., Harper, G.W., Domanico, R. (2005).
  Predictors of medication adherence among
  HIV-infected youth. Psychology, Health
  Medicine, 10 (2), 166-179.
• Janz, N.K. Becker, M. (1984). The Health Belief
  Model a decade later. Health Education
  Quarterly, 11 (1), 1-47.
• Kail, R.V. (2004). Children and their Development
  (3rd ed). Upper Saddles River, NJ Pearson
  Education, Inc.
• Katko, E., Johnson, G.M., Fowler, S.L., Turner,
  R.B. (2001). Assessment of adherence with
  medications in human immunodeficiency
  virus-infected children. The Pediatric Infectious
  Disease Journal, 20 (12), 1174-1176.
• LaGreca, A.M. Bearman, K.J. (2003). Adherence
  to pediatric treatment regimens. In M.C. Roberts
  (Ed.), Handbook of Pediatric Psychology (3rd Ed.,
  pp 119-140). New York, NY Guildford Press.
• Lee, C.L. Johann-Liang, R. (1999). Disclosure
  of the diagnosis of HIV/AIDS to children born of
  HIV-infected mothers. AIDS Patient Care and STDs,
  13 (1), 41-45.
• Malcolm, S. E., Ng, J. J., Rosen, R. K., Stone,
  V. E. (2003). An examination of HIV/AIDS patients
  who have excellent adherence to HAART. AIDS Care,
  15(2), 251-261.
• Martinez, J., Bell, D., Camacho, R., Henry-Reid,
  L.M., Bell, M., Watson, C., Rodriguez, F.
  Adherence to antiviral drug regimens in
  HIV-infected adolescent patients engaged in care
  in a comprehensive adolescent and young adult
  clinic. Journal of the National Medical
  Association, 92 (2), 55-61.
• Morgenstern, T.T., Grimes, D.E., Grimes, R.M.
  (2002). Assessment of readiness to initiate
  antiretroviral therapy. HIV Clinical Trials, 3,
  168-172.
• Murphy, D.A., Wilson, C.M., Durako, S.J., Muenz,
  L.R., Belzer, M. Antiretroviral medication
  adherence among the REACH HIV-infected adolescent
  cohort in the USA. AIDS Care, 13 (1), 27-40.

40
References

• Panel on Clinical Practices for Treatment of HIV
  Infection. Guidelines for the use of
  Antiretroviral Agents in HIV-1-Infected Adults
  and Adolescents. January 29, 2008. http//www.
  hivatis.org
• Patrick, D.L. Erickson, P. (1993). Health
  studies and health Quality of life in health
  care evaluation and resource allocation. New
  York, NY Oxford University Press.
• Penedo, F.J., Gonzalez, J.S., Dahn, J.R., Antoni,
  M., Malow, R., Costa, P., Schneiderman, N.
  (2003). Personality, quality of life and HAART
  adherence among men and women living with
  HIV/AIDS. Journal of Psychosomatic Research, 54,
  271-278.
• Prochaska, J.O., DiClemente, C.C. (1986).
  Toward a comprehensive model of change. In W.R.
  Miller N. Heather (Eds.), Treating addictive
  behaviors Processes of change (pp. 3-27). New
  York Plenum
• Robinson, F.P. (2004). Measurement of quality of
  life in HIV disease. Journal of the Association
  of Nurses in AIDS Care, 15, 14S-19S.
• Sankar, A.P., Nevedal, D.C., Neufeld, S.,
  Luborsky, M.R. (2007). What is a missed dose?
  Implications for construct validity and patient
  adherence. AIDS Care, 19, 775-780.
• Spirito, A. Kazak, A. E. (2006). Effective and
  Emerging Treatments in Pediatric Psychology. New
  York, NY Oxford University Press.
• The Belmont report Ethical principles and
  guidelines for the protection of human subjects
  of research. (1979). The national commission for
  the protection of human subjects of biomedical
  and behavioral research.
• Thomason, B.T., Bachanas, P.J. Campos, P.E.
  (1996). Cognitive behavioral interventions with
  persons affected by HIV/AIDS. Cognitive and
  Behavioral Practice, 3, 417-442
• Tsai, Y., Holzemer, W. L., Leu, H. (2005). An
  evaluation of the effects of a manual on
  management of HIV/AIDS symptoms. International
  Journal of STD AIDS, 16, 625-629.

41
References

• Wagner, G. J. (2002). Predictors of
  antiretroviral adherence as measured by
  self-report, electronic monitoring and medication
  diaries. AIDS, 16, 269-277.
• Willey, C., Redding, C., Stafford, J., Garfield,
  F., Geletko, S., Flanigan, T. et al. (2000).
  Stages of change for adherence with medication
  regimens for chronic disease Development and
  validation of a measure. Clinical Therapeutics,
  22, 7, 858-871.
• Wills, T. (2006, March). Strategies for
  antiretroviral therapy in adults. Paper presented
  at the 15th Annual HIV Conference of the
  Florida/Caribbean AIDS Education and Training
  Center.

42
Additional References

• Murphy, D. A., Roberts, K. J., Martin, D. J.,
  Marelich, W., Hoffman, D. (2000). Barriers to
  anti-retroviral adherence among HIV-infected
  addicts. AIDS Patient Care and STDs, 14, 27-40.
• Wiener, L., Riekert, K., Ryder, C., Wood, L.V.
  (2004). Assessing medication adherence in
  adolescents with HIV when electronic monitoring
  is not feasible. AIDS Patient Care and STDs, 18
  (9), 527-538.
• Workman, C. (1999). The process of supporting
  adherence. FOCUS A Guide to AIDS Research and
  Counseling, 14 (2), 1-4.