Chapter 21: Adherence to Medical Regimens Alan M. Delamater Ashley 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 characteristics 2) Parent, family, and social factors 3) Medial system factors 4) Cultural factors

Compliance vs. Adherence Compliance: the extent to which a person’s behavior coincides with medical advice Noncompliance: 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 result Multidimensional 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 approaches Education Behavioral Psychologically 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 sessions Individuals 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 skills Emotional components (e.g., patient and family adjustment to the diagnosis) In youth with diabetes, stress management and coping skills training reduced Diabetes-related stress Improved social interaction Increased 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 illness Many responsibilities of managing chronic illness Example: significant impact of family functioning on diabetes management Parents provide an example of goal setting and planning for their child Parenting 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 effects Demographics (e.g., culture, SES) Illness comorbidity Health 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 patients Race, 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 management E.g., parents who perceived a treatment to be more effective were more likely to adhere to the regimen

Measuring Treatment Effects Methods: Serum assays Pill counts Electronic monitor Self-report 24-hour recall Diaries

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 prescribed Electronic 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 adolescents Note: 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 flexible Approach 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