Adherence in Pediatric Psychology Melissa Stern November 21

Adherence in Pediatric Psychology Melissa Stern November 21, 2006

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)

Evolution of terminology COMPLIANCE SELF-MANAGEMENT ADHERENCE CONCORDANCE

Theories of Adherence ¢ The Adherence/Compliance Approach l l 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 l Limitations: asymptomatic conditions, overlooks barriers

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

Theories of Adherence ¢ Health Belief Model l 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 l Again, difficult to apply to pediatric conditions!

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

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

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

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, Hgb. A 1 c

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 ¢

Health Status & Heath Behavior Health Status Good Poor Good Behavior Poor Johnson, 1994

Health Status & Heath Behavior: Pediatric Diabetes Health Status: Metabolic Control Good Poor (Hgb. A 1 c < 7. 7) Good Behavior: (Hgb. A 1 c > 10. 1) 30 % 18 % 24 % 28 % Adherence Poor Johnson, 1994

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 l l Chemo/radiation for a 10 y/o with leukemia Adults taking glucosamine chondroitin for arthritis

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

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)

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

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

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

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

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

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

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?

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

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

Adherence Interventions ¢ Peer interventions ¢ Barrier reduction? ¢ Multicomponent interventions l “Self Management Training”