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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