Chapter 21: Adherence to Medical Regimens

Alan M. DelamaterAshley Marchante

Amber Daigre

Brief Overview

Regimen adherence is critical to chronic illness management~50% average rate of adherence in youth

Ecological model: Adherence is determined by multiple levels of influence:1) Child characteristics2) Parent, family, and social factors3) Medial system factors4) Cultural factors

Compliance vs. Adherence

Compliance: the extent to which a person’s behavior coincides with medical adviceNoncompliance: patients disobey their doctor’s advice

Adherence: active, voluntary, and collaborative involvement of the patient in a mutually acceptable course of behavior to produce a therapeutic resultMultidimensional rather than unitary construct

Evidence-Based Approaches: Nonadherence

Nonadherence spans a wide range of medical illnesses, but asthma and diabetes are most well-studied

Three main approachesEducationBehavioralPsychologically based

Educational Interventions

Provide verbal or written information about the nature of the childhood illness and the various treatment options and strategies for disease management (Dean et al., 2010)

Do not typically include exploration of barriers

Provided in a single session or across several sessionsIndividuals or groups

Improvements in adherence demonstrated in children with asthma (Guevara et al., 2003)

Behavioral Interventions

Problem-focused

Address specific behaviors and barriers that preclude patients from optimal regimen adherence

Efficacy of behavioral interventions for children and adolescents with diabetes (Delamater, 2009)

Strategies: self-monitoring of regimen behaviors, goal setting, positive reinforcement, behavioral contracts, supportive parental communications, appropriately shared responsibility

Period right after diagnosis presents opportunities for behavioral and psychological interventions

Approaches with positive findings: home-based multisystemic therapy, motivational interviewing

Psychological and Psychosocial Interventions

Comprehensive approach to addressing adherence

Target: Self-management skillsEmotional components (e.g., patient and family adjustment to

the diagnosis)

In youth with diabetes, stress management and coping skills training reducedDiabetes-related stressImproved social interactionIncreased glucose monitoring Improved glycemic control

Intervention Meta-Analyses

Results indicate that improved health outcomes were significantly better for studies using a combination of behavioral and educational intervention (e.g., Dean et al., 2010)

Parental Involvement

Essential that parents play an integral role in the management of their child’s illnessMany responsibilities of managing chronic illness

Example: significant impact of family functioning on diabetes managementParents provide an example of goal setting and planning for

their childParenting style can influence self-management behaviors

Parental involvement in caring for their child may represent a significant stressor for parents

Adaptations and Modifications

Important factors to consider: Developmental effectsDemographics (e.g., culture, SES)Illness comorbidityHealth beliefs

Developmental Issues

Biological, cognitive, emotional, and social changes play an interactive role in affecting illness management

Example: Metabolic changes that occur during puberty, paired with transitions in family and social roles, make it more difficult to achieve optimal glycemic control (Anderson & McKay, 2011)

Demographics and Family Functioning

Low SES and minority ethnic/racial group are associated with increased risk for poor adherence and health outcomes (Anderson et al., 2011)

Example: pediatric asthma patientsRace, single-parent homes, parental education, and income

were consistently associated with level of nonadherence

Family factors Family conflict consistently related with poorer health

outcomes

Parent and Child Psychological Factors

Mental health symptoms are higher among youths with chronic illness

Example: Adolescents with Type 1 diabetes are at increased risk for anxiety, depression, and disordered eating (Delamater, 2009)

CBT can be used to improve regimen adherence

Illness perception can affect illness managementE.g., parents who perceived a treatment to be more effective

were more likely to adhere to the regimen

Measuring Treatment Effects

Methods: Serum assaysPill countsElectronic monitorSelf-report24-hour recallDiaries

Indirect and Direct Measures

Direct:Assays: drug assays, such as blood, urine, saliva

samples• Objective measure to identify amount of prescribed medication that

is present in the body• Can be expensive

Indirect: Pill count: compare dose of a prescription that is taken

from the pill bottle to the dosage prescribedElectronic monitor: can be used to assess glucose

testing, insulin blousing, oral medication use, inhaled medication use, and nebulized medication

Subjective Measures

Self-report: child, parent, and physician report questionnaires or structured interviews are most commonly used measures of adherence in research and clinical practice across many pediatric chronic illnesses (e.g., HIV-AIDS, diabetes, asthma)E.g., Self-Care Inventory for parents and adolescentsNote: Individuals tend to overestimate adherence and have

problems with accurate recall

Diaries: handwritten logs, computerized devices, or cell phones; record daily adherence behaviors

24-hour recall: self-report measure to record the events of the previous day

Considerations

Clinicians and researchers should use more than one kind of measure to assess adherence due to the challenges in accurately assessing adherence behaviors

Future research should focus on tailoring methods of assessment to be shorter while maintaining their effectiveness

Clinical Case

13-year-old patient

Type 1 diabetes

Doing well socially and academically

Had poor glycemic control

Initial evaluation: measurement of hemoglobin A1c, interviews with patient and mother, questionnaires used to assess diabetes-related family conflict, support, responsibilities, and quality of life

Clinical Case (Cont’d)

Intervention: standardized but flexibleApproach used motivational interviewing, information

sharing, goal setting, family communication

Outcome: Patient’s hemoglobin A1c showed significant improvement, questionnaires indicated symptom improvement, and there was a decrease in family conflict