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 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

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!

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!

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 (post-transplant regimen)?

For chronic illnesses (asthma, diabetes)?

For acute illnesses (bacterial infection)?

For lifestyle medical issues (obesity)?

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!!

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

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

Behavior

Health Status

Good Poor

Good

Poor

Johnson, 1994

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

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

Health Status & Adherence: Importance of Tx Effectiveness

Strong Tx

Weak Tx

Inert Tx

Adherence

Poor Good

Health Status

Poor

Good

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. 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

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• 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

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 approachesBehavioral approaches

• Medical supervision/monitoring• Visual cues and reminders• Self-monitoring• Reinforcement

Family Interventions

Adherence Interventions

Peer interventions

Barrier reduction?

Multicomponent interventions“Self Management Training”