1. Adherence in Pediatric Psychology Melissa Stern November 21, 2006

2. What is adherence? “the extent to which a person’s behavior (in terms of taking medications, following diets, or executing life style changes) coincides with medical or health advice” (Haynes, 1979, pp 2-3) “a person’s behavior in relation to a prescribed medical regimen” (La Greca & Bearman, 2003)

3. Evolution of terminology COMPLIANCE SELF-MANAGEMENTADHERENCE CONCORDANCE

4. Theories of Adherence The Adherence/Compliance Approach Applies to patients with an existing problem Assumptions: Pt. needs to be treated Pt. wants to initiate/maintain treatment and has sought medical care for that purpose Pt. should be motivated to comply for symptom relief Limitations: asymptomatic conditions, overlooks barriers

5. Theories of Adherence Transtheoretical Model (Stages of Change) Five stages in the adoption of health-related behaviors: Precontemplation Contemplation Preparation Action Maintenance Match intervention to stage Very difficult to apply to pediatric conditions!

6. Theories of Adherence Health Belief Model Can be applied to preventative treatments Views patients as autonomous “decision makers” Considers the patient’s perceptions of: Threat of illness Effectiveness of treatment Barriers to treatment Again, difficult to apply to pediatric conditions!

7. Measuring Adherence Categorical approach with adherence as a unitary construct adherent, nonadherent, or good, moderate, poor Multidimensional, continuous construct Use multiple behaviors as indicators Assess adherence along a continuum

8. Why is it important to measure adherence? For life-threatening illnesses (post- transplant regimen)? For chronic illnesses (asthma, diabetes)? For acute illnesses (bacterial infection)? For lifestyle medical issues (obesity)?

9. Measuring Adherence Self-reports Easy and inexpensive but have questionable accuracy, social desirability effects, and parent/child disagreement Health Provider ratings Easy and provider has extensive knowledge about regimen but can be biased by history, health status, patient’s presentation Behavioral monitoring Can be more accurate than retrospective report but time intensive and susceptible to social desirability Pill counts May overestimate adherence Medicine bottle cap removal counts May overestimate adherence Daily blood draws to test levels Extremely accurate, but highly unrealistic!!

10. Measuring Adherence Electronic monitoring devices MEMS caps, blood glucose monitors, vests for CF Lab assays blood, urine, etc. tests used mainly for medication adherence Health status indicators biological measures of disease status pulmonary function tests, HgbA1c

11. Health Status & Adherence Health status and adherence are not interchangeable terms Health status measures are widely used by medical providers because they have been linked to long-term outcomes of morbidity and mortality Most medical providers (and psychologists, too!) infer than health status = adherence

12. Health Status & Heath Behavior Behavior Health Status GoodPoor Good Poor Johnson, 1994

13. Health Status & Heath Behavior: Pediatric Diabetes 30 % 18 % 24 % 28 % Behavior: Adherence Health Status: Metabolic Control Good (HgbA1c < 7.7) Poor (HgbA1c > 10.1) Good Poor Johnson, 1994

14. Why the discrepancy?? Imperfect measurement of adherence e.g., poor measures, patients may report good adherence but may not be performing behaviors accurately Treatment effectiveness can affect the health status-adherence relationship Chemo/radiation for a 10 y/o with leukemia Adults taking glucosamine chondroitin for arthritis

15. Health Status & Adherence: Importance of Tx Effectiveness Strong Tx Weak Tx Inert Tx Adherence PoorGood Health Status Poor Good

16. Nonadherence: The norm rather than the exception “... patients do not fail to comply, rather, they choose another course of behavior. The doctor’s advice is just one input among many in how to handle health and illness. Providers may consider the decisions that patients make irrational, but they may be quite rational from the patients’ perspective.” (Bauman, 2004) 10,000 journal articles on adherence—yet, rates of nonadherence remain high “adaptive noncompliance” (La Greca & Bearman, 2003)

17. Prevalence of Nonadherence Nonadherence occurs regardless of age, race, gender, and disease In pediatric populations, nonadherence is estimated at 50% Rates are higher for chronic conditions Adherence declines over time Adolescents are generally less adherent than younger children

18. Types of Nonadherence Volitional nonadherence —patient hears and understands the medical advice, but chooses not to adhere Inadvertent nonadherence —patient accepts medical advice and believes that they are following it “Good enough” adherence Barriers to adherence Misunderstood treatment regimen

19. Risk Factors for Volitional Nonadherence 1. Difficulty & disruptiveness of regimen 2. Skepticism about efficacy 3. Side effects 4. Patient beliefs, fears, concerns 5. Cost of treatment 6. Denial of diagnosis 7. Physician prescribing practices

20. Risk Factors for Inadvertent Nonadherence 1. Patient characteristics Intellectual functioning, memory, stress, lack of resources, lack of social support, disease knowledge 2. Developmental considerations Medication refusal Cognitive abilities of children Adolescents’ independence/autonomy

21. Risk Factors for Inadvertent Nonadherence 3. Provider/System characteristics Poor patient-provider communication Lack of patient education Long waiting times, geographic distance, unfriendly staff 4. Regimen characteristics Complexity Frequency of regimen-drift over time

22. Special Considerations for Pediatric Patients Barriers can exist for the parent and the child Importance of family interactions Developmental issues: Toddlers—may be oppositional with painful procedures, bad tasting meds, activity restrictions School-aged—may not adhere if they are teased at school Adolescents—may experiment with meds to exert control, struggle for independence from parents

23. Special Considerations for Pediatric Patients Disagreements between parent/child report of adherence Child behavior/psychological diagnoses may be a significant barrier Environment in which adherence behavior needs to occur (e.g., at school) Disease knowledge is important for family member who is responsible for treatment Transfer of responsibility for disease management from child to parent When should this occur?

24. Adherence & Self-Care Autonomy in Diabetes Calculated self-care index based on ratio of self-care autonomy and psychological maturity (cognitive function, academic achievement, social-cognitive development) Youth were grouped into 3 categories: constrained, maximal, and excessive autonomy Those with excessive autonomy had poorer adherence (and poorer metabolic control and disease knowledge) Suggests that parents should remain involved in adolescents’ self-management

25. Adherence Interventions Types of interventions: Educational approaches Behavioral approaches Medical supervision/monitoring Visual cues and reminders Self-monitoring Reinforcement Family Interventions

26. Adherence Interventions Peer interventions Barrier reduction? Multicomponent interventions “Self Management Training”