Systematic review and meta-analysis of interventions to promote medication adherence among children, adolescents, and young adults with medical conditions.

OBJECTIVE: This meta-analysis examined the efficacy of adherence-promotion interventions for children, adolescents, and young adults prescribed a medication for > 90 days as part of a treatment regimen for a medical condition. METHODS: A systematic literature review was conducted to identify randomized controlled trials of adherence-promotion interventions published between 2013 and 2023 and including children, adolescents, and/or young adults with a medical condition. A total of 38 articles representing 39 trials met inclusion criteria. A narrative synthesis was conducted to summarize included trials and a random-effects model was used to compute an overall intervention effect. Effect sizes by adherence outcome assessment methodology, participant age, and technology use were also computed. RESULTS: Pediatric adherence-promotion interventions demonstrate a medium effect with those randomized to an intervention displaying greater improvements in medication adherence than those randomized to a comparator condition (SMD = 0.46, 95% CI: 0.31, 0.60, n = 37; 95% Prediction Interval: -0.32, 1.23). CONCLUSIONS: Adherence interventions for children, adolescents, and young adults with medical conditions increase adherence.

Understanding the unique and common perspectives of partners engaged in knowledge mobilization activities within pediatric pain management: a mixed methods study.

BACKGROUND: Knowledge mobilization (KM) is essential to close the longstanding evidence to practice gap in pediatric pain management. Engaging various partners (i.e., those with expertise in a given topic area) in KM is best practice; however, little is known about how different partners engage and collaborate on KM activities. This mixed-methods study aimed to understand what different KM partner groups (i.e., health professionals, researchers, and patient/caregiver partners) perceive as supporting KM activities within pediatric pain management. METHODS: This study used a convergent mixed-methods design. Ten partners from each of the three groups participated in interviews informed by the Consolidated Framework for Implementation Research, where they discussed what impacted KM activities within pediatric pain. Participants then rated and ranked select factors discussed in the interview. Transcripts were analyzed within each group using reflexive thematic analysis. Group-specific themes were then triangulated to identify convergence and divergence among groups. A matrix analysis was then conducted to generate meta-themes to describe overarching concepts. Quantitative data were analyzed using descriptive statistics. RESULTS: Unique themes were developed within each partner group and further analysis generated four meta-themes: (1) team dynamics; (2) role of leadership; (3) policy influence; (4) social influence. There was full agreement among groups on the meaning of team dynamics. While there was partial agreement on the role of leadership, groups differed on who they described as taking on leadership positions. There was also partial agreement on policy influence, where health professionals and researchers described different institutions as being responsible for providing funding support. Finally, there was partial agreement on social influence, where the role of networks was seen as serving distinct purposes to support KM. Quantitative analyses indicated that partner groups shared similar priorities (e.g., team relationships, communication quality) when it came to supporting KM in pediatric pain. CONCLUSIONS: While partners share many needs in common, there is also nuance in how they wish to be engaged in KM activities as well as the contexts in which they work. Strategies must be introduced to address these nuances to promote effective engagement in KM to increase the impact of evidence in pediatric pain.

Barriers to medication adherence in children, adolescents, and young adults prescribed anticoagulation.

Pediatric and adolescent and young adult (AYA) thromboembolism is treated with anticoagulation, but little is known about adherence. The aims of this study were to describe barriers to adherence among children and AYAs (ages 0-25 years) prescribed anticoagulants and to explore the relationship between barriers and self-reported adherence. Nearly 75% of patients and caregivers reported barriers, and a larger number of barriers was associated with missing at least one dose in the past month per both patient (rpb  = 0.48, p = .01) and caregiver (rpb  = 0.52, p = .01) report. Limitations, clinical implications, and future directions are discussed.

Barriers to medication adherence among adolescents and young adults with cancer.

BACKGROUND: Adherence promotion is a critical component of adolescent and young adult (AYA) cancer care, but predictors of nonadherence that could be targeted in intervention efforts remain largely unknown. The purpose of this multi-site longitudinal observational study was to examine the relationship between barriers and medication adherence among AYAs with cancer. PROCEDURE: Sixty-five AYAs (ages 15-24 years; mean age = 18.97 years, SD = 2.51; Mmean time since diagnosis = 1.42 years, SD = 1.95) with newly diagnosed or relapsed cancer completed self-report measures of barriers and adherence at quarterly study visits and used an electronic adherence monitoring device for 12 months. Longitudinal mixed effects models were used to examine our primary hypothesis that greater barriers are related to lower adherence over time. Descriptive statistics were used to explore our secondary aim of describing the frequency and patterns of barriers endorsed by AYAs with cancer. RESULTS: After controlling for covariates (time, medication type, race, ethnicity, diagnosis, time since diagnosis), a greater number of barriers was associated with lower electronically monitored (ß = -5.99, p = .005) and self-reported (ß = -1.92, p < .001) adherence. The specific barriers endorsed by AYAs differed across participants, and the majority of AYAs endorsed an entirely different pattern of barriers than any other AYA in the study. CONCLUSION: Barriers are associated with nonadherence and may be a promising target for intervention. Individual variability across barriers, however, suggests that tailoring may be necessary, and a promising next step is to explore personalized approaches to adherence promotion.

Diversity, Equity, and Inclusion within Pediatric Adherence Science.

Given the long-standing history of systemic racism in psychological science, diversity, equity, and inclusion (DEI) efforts are increasingly vital to the advancement and improvement of the field. This commentary extends the seminal work of the article Upending Racism in Psychological Science: Strategies to Change How Our Science is Conducted, Reported, Reviewed, and Disseminated (Buchanan et al., Am Psychol, https://doi.org/10.31234/osf.io/6nk4x , 2020) by providing tangible applications and recommendations to improve DEI integration into pediatric adherence science. Real-world adherence examples are discussed regarding the challenges faced in systematically integrating DEI principles, potential solutions to overcoming barriers, and the implications of these efforts on scientific advancement in an effort to address and dismantle research practices that perpetuate inequity and White supremacy. Specifically, we provide discourse and practical guidance related to the conduct, reporting, reviewing, and dissemination of pediatric adherence science to promote dialog and produce actionable change toward the promotion of health equity and social justice.

A systematic review of adherence to anticoagulation regimens in pediatric patients.

Thromboembolic disease rates are increasing in pediatric patients. Anticoagulation is prescribed for treatment and prevention of thromboembolic disease. While nonadherence to anticoagulation regimens predicts poor health outcomes in adults, data in anticoagulated pediatric patients are limited. We systematically reviewed the rates, outcomes, and predictors of anticoagulation nonadherence in the pediatric population. Out of a total of 3581 unique articles identified for review, 17 studies met inclusion criteria. These studies primarily evaluated patients with cardiac disease treated with vitamin K antagonists. Overall nonadherence rates varied from 3% to 42%, based upon population, definition of adherence, and measurement strategy. Patient age, goal international normalized ratio (INR), and number of concurrent potentially interacting medications correlated with nonadherence. Data examining the relationship between nonadherence and health outcomes were included in only two studies. Limitations of current literature, as well as critical knowledge gaps that require future study, are discussed.

Development and Preliminary Validation of a Multidimensional Psychosocial Assessment Strategy for Young Adults With Cancer.

OBJECTIVE: Regular psychosocial assessment is a best-practice guideline for young adult oncology care, but multipurpose, multidimensional, developmentally appropriate patient-reported outcome measurement strategies for young adults with cancer are lacking. This study reported on the development and preliminary validation of the Young Adult Psychosocial Assessment Strategy (YA-PAS), a tool designed to meet this clinical need. METHODS: The YA-PAS was developed based on the literature and clinician feedback. 20 young adults with cancer participated in cognitive interviews to provide feedback on complexity, readability, and applicability to inform measure refinement. Following refinements, 100 young adults with a history of cancer participated in an observational study including a preliminary evaluation of YA-PAS factor structure, internal consistency, test-retest reliability, construct and criterion validity, feasibility, and acceptability. RESULTS: Cognitive interviews and psychometric evaluation informed modifications and resulted in a measure with 9 domains (anxiety, depression, cognitive functioning, post-traumatic stress, family stressors, support, social isolation, self-efficacy for symptom management, and self-efficacy for medication management) and nonscoring items assessing substance use, life stressors, resources, educational/vocational status, and relationship status. 8 of 9 domains demonstrated acceptable internal consistency (Cronbach's α ≥ 0.70), substantial (r = 0.61-0.80) or almost perfect (r > 0.80) test-retest reliability, and evidence of domain and cut-point validity. 89% of participants were able to complete the YA-PAS within 20 min and 87% were satisfied with the measure. CONCLUSIONS: The YA-PAS demonstrated promising psychometric properties, feasibility, and acceptability. Clinical implications and research recommendations are discussed.

Psychometric evaluation of the brief RCOPE and relationships with psychological functioning among caregivers of children undergoing hematopoietic stem cell transplant.

OBJECTIVE: Spiritual and religious (S/R) coping is a relevant yet understudied domain of coping among caregivers of children undergoing hematopoietic stem cell transplantation (HCT). The aims of this manuscript are to: (1) conduct the first psychometric evaluation of the Brief RCOPE in this population; (2) examine levels of and changes in S/R coping over time; and (3) explore the relationship between S/R coping trajectories and psychological functioning post-HCT. METHODS: Caregivers (n = 170) of children (ages ≤12 years, n = 170) undergoing HCT completed the Brief RCOPE and the Brief Symptom Inventory (BSI) pre- and at multiple time points post-HCT discharge. Factor structure, internal consistency, and validity were examined. Growth mixture models were used to identify subgroups with similar S/R coping trajectories, with group memberships added to mixture models to explore relationships between group membership and caregiver psychological functioning trajectories. RESULTS: The Brief RCOPE exhibited the previously-supported two factor structure and each subscale demonstrated strong internal consistency (α = 0.85 and 0.92). Validity was supported by significant correlations with BSI scores. There were distinct subgroups of caregivers with different patterns of positive (n = 4 subgroups) and negative (n = 3 subgroups) S/R coping, with negative coping subgroup membership predicting changes in psychological functioning. CONCLUSIONS: The Brief RCOPE is a promising measure for assessing S/R coping among caregivers of children undergoing HCT and has the potential to identify caregivers at risk for poorer long-term psychological functioning.

Using Electronic Monitoring Devices to Assess Medication Adherence: a Research Methods Framework.

While electronic adherence monitoring devices (EAMDs) are the preferred and most objective medication adherence measurement strategy for many populations and research questions, there is no comprehensive methodological framework for EAMD use. We synthesize recommendations from experts in adherence science and the scientific literature to create a temporal framework of EAMD research methods. The goal of this framework is to provide a step-by-step guide that will enable researchers to design, prepare, implement, and clean data from rigorous, high-quality studies using EAMDs to assess adherence. Resources including a checklist of methodological considerations and example protocols have been created to assist readers in using this framework.

Patient-Reported Outcomes for Pediatric Adherence and Self-Management: A Systematic Review.

OBJECTIVE: Treatment adherence is approximately 50% across pediatric conditions. Patient-reported outcomes (PROs) are the most common method of measuring adherence and self-management across research and clinical contexts. The aim of this systematic review is to evaluate adherence and self-management PROs, including measures of adherence behaviors, adherence barriers, disease management skills, and treatment responsibility. METHODS: Following PRISMA guidelines for systematic reviews, literature searches were performed. Measures meeting inclusion/exclusion criteria were evaluated using Hunsley and Mash's (2018) criteria for evidence-based assessment across several domains (e.g., internal consistency, interrater reliability, test-retest reliability, content validity, construct validity, validity generalization, treatment sensitivity, and clinical utility). Rating categories were adapted for the present study to include the original categories of adequate, good, and excellent, as well as an additional category of below adequate. RESULTS: After screening 172 articles, 50 PROs across a variety of pediatric conditions were reviewed and evaluated. Most measures demonstrated at least adequate content validity (n = 44), internal consistency (n = 34), and validity generalization (n = 45). Findings were mixed regarding interrater reliability, test-retest reliability, and treatment sensitivity. Less than half of the measures (n = 22) exhibited adequate, good, or excellent construct validity. CONCLUSIONS: Although use of adherence and self-management PROs is widespread across several pediatric conditions, few PROs achieved good or excellent ratings based on rigorous psychometric standards. Validation and replication studies with larger, more diverse samples are needed. Future research should consider the use of emerging technologies to enhance the feasibility of broad implementation.

Earlier Pediatric Psychology Consultation Predicts Lower Stem Cell Transplantation Hospital Costs.

Objective: The purpose of this study was to examine the hypothesis that earlier time to psychology consultation would predict lower costs for the initial stem cell transplant (SCT) hospitalization among patients receiving care at a children's hospital. Methods: A retrospective medical record review identified 75 patients (ages 0-32 years) with one or more visits by a licensed clinical psychologist during the initial SCT hospitalization from 2010 to 2014. Demographic and clinical variables were obtained from the electronic medical record and hospitalization costs were obtained from patient billing records. A generalized linear model with a gamma distribution and log link function was used to estimate the relationship between time to psychology consultation and cost for the initial SCT hospitalization while controlling for demographic, clinical, and utilization factors. Results: After controlling for age at SCT, gender, race, insurance status, diagnosis, SCT type, length of stay, and number of psychology visits, earlier time to psychology consultation predicted lower costs for the initial SCT hospitalization (χ2 = 6.83, p = .01). When the effects of covariates were held constant, every day increase in the time to psychology consultation was associated with a 0.3% increase in SCT hospitalization costs (ß = 0.003, SE = 0.001). Conclusions: Results suggest that facilitating consultations with a pediatric psychologist early in the initial SCT hospitalization may reduce costs for patients undergoing SCT at children's hospitals. Future research is needed to determine the optimal timing of psychology consultation and quantify the economic impact of psychological services.

Application of a Discrete Choice Experiment to Assess Adherence-Related Motivation Among Adolescents and Young Adults With Cancer.

Objective: To develop and pilot test a discrete choice experiment (DCE) to assess the specific factors likely to motivate a given adolescent or young adult with cancer to adhere to medications included in treatment protocols. Methods: A multimethod and iterative approach was used. Twenty adolescents and young adults with cancer participated in DCE pilot testing and refinement. Hierarchical Bayes was used to estimate attribute and attribute-level preference scores for each participant. Results: The final DCE included nine choice sets composed of four attributes. The resulting DCE was modified with feedback from 20 adolescents and young adults (M[SD] age = 18.66 [2.95]) with cancer. The DCE was understandable and relevant. The factors likely to motivate adolescents and young adults with cancer to be adherent differed across individuals. Conclusions: DCEs including the measure developed in this manuscript offer a novel approach to understanding individual-level differences critical for informing adherence-promotion efforts.

Cost-Effectiveness Analysis of an Adherence-Promotion Intervention for Children With Leukemia: A Markov Model-Based Simulation.

Objective: Improving medication adherence among children with B-cell precursor acute lymphoblastic leukemia (B-ALL) has the potential to reduce relapse rates but requires an investment in resources. An economic evaluation is needed to understand the potential costs and benefits of delivering adherence-promotion interventions (APIs) as part of standard clinical care. Methods: A Markov decision analytic model was used to simulate the potential incremental cost-effectiveness per quality-adjusted life year (QALY) to be gained from an API for children with B-ALL in first continuous remission compared with treatment as usual (TAU, no intervention). Model parameter estimates were informed by previously published studies. The primary outcome was incremental cost (2015 US$) per QALY gained for API compared with TAU. Results: The model predicts the API to result in superior health outcomes (4.87 vs. 4.86 QALYs) and cost savings ($43,540.73 vs. $46,675.71) as compared with TAU, and simulations indicate that, across a range of plausible parameter estimates, there is a 95% chance that the API is more effective and less costly than TAU. The API was estimated to remain more effective and less costly than TAU in situations where the prevalence of nonadherence exceeds 32% and when API improves baseline adherence in at least 3% of patients. Conclusions: Providing APIs to children with B-ALL may improve health outcomes and save costs over a 6-year period.

Spending on Hospital Care and Pediatric Psychology Service Use Among Adolescents and Young Adults With Cancer.

Objective: To examine the relationship between need-based pediatric psychology service use and spending on hospital care among adolescents and young adults (AYAs) with cancer. Methods: Billing data were obtained from 48 AYAs with cancer receiving need-based pediatric psychology services and a comparison cohort of 48 AYAs with cancer not receiving services. A factorial analysis of covariance examined group differences in spending for hospital care. Pending significant findings, a multivariate analysis of covariance was planned to examine the relationship between need-based pediatric psychology service use and spending for inpatient admissions, emergency department (ED) visits, and outpatient visits. Results: Spending for hospital care was higher among AYAs receiving need-based pediatric psychology services than in the comparison cohort (p < .001, ωPartial2 = .11). Group differences were driven by significantly higher spending for inpatient admissions and ED visits among AYAs receiving need-based pediatric psychology services. Conclusions: The behavioral and psychosocial difficulties warranting need-based pediatric psychology services may predict higher health care spending.

Targeting Health Behaviors to Reduce Health Care Costs in Pediatric Psychology: Descriptive Review and Recommendations.

OBJECTIVE: Recent efforts to enhance the quality of health care in the United States while reducing costs have resulted in an increased emphasis on cost containment and the introduction of new payment plans. The purpose of this review is to summarize the impact of pediatric health behavior change interventions on health care costs. METHODS: A review of PubMed, PsycINFO, and PEDE databases identified 15 articles describing the economic outcomes of pediatric health behavior change interventions. Data describing the intervention, health outcome, and economic outcome were extracted. RESULTS: All interventions targeting cigarette smoking (n = 3) or the prevention of a chronic medical condition (n = 5) were predicted to avert hundreds of dollars in health care costs per patient. Five of the seven interventions targeting self-management were associated with reductions in health care costs. CONCLUSIONS: Pediatric health behavior change interventions may be a valuable component of efforts to improve population health while reducing health care costs.

Quality of Life Changes and Health Care Charges Among Youth With Epilepsy.

OBJECTIVE: To examine differences in health care charges following a pediatric epilepsy diagnosis based on changes in health-related quality of life (HRQOL). METHODS: Billing records were obtained for 171 youth [M (SD) age = 8.9 (4.1) years] newly diagnosed with epilepsy. Differences in health care charges among HRQOL groups (stable low, declining, improving, or stable high as determined by PedsQL(™) scores at diagnosis and 12 months after diagnosis) were examined. RESULTS: Patients with persistently low or declining HRQOL incurred higher total health care charges in the year following diagnosis (g = .49, g = .81) than patients with stable high HRQOL after controlling for epilepsy etiology, seizure occurrence, and insurance type. These relationships remained consistent after excluding health care charges for behavioral medicine or neuropsychology services (g = .49, g = .80). CONCLUSIONS: Monitoring HRQOL over time may identify youth with epilepsy at particular risk for higher health care charges.

Assessing Medication Adherence as a Standard of Care in Pediatric Oncology.

Poor adherence to pediatric cancer treatment protocols may prevent children and adolescents from realizing the potential benefits of therapy. This paper presents the evidence for a standard of care for supporting medication adherence. Databases were reviewed for articles examining adherence and including children and/or adolescents with cancer. Fourteen articles (i.e., qualitative, quantitative, review, and randomized clinical trials) were evaluated for rigor. There is moderate-quality evidence to support a strong recommendation for adherence to be assessed routinely and monitored throughout the treatment. Integrating the proposed clinical procedures into standard clinical care may improve outcomes for children and adolescents with cancer.

Topical Review: Theoretical Frameworks in Pediatric Adherence-Promotion Interventions: Research Findings and Methodological Implications.

OBJECTIVE: To summarize the guiding theoretical frameworks included in pediatric adherence-promotion interventions and characterize targeted domains using the theoretical domains framework (TDF), a standardized system developed by adult behavior change researchers. METHODS: A systematic review of PubMed, PsycINFO, and CINAHL databases identified 47 articles describing pediatric adherence-promotion interventions. Data extraction was completed independently by two authors. Targeted intervention domains were classified using the TDF. RESULTS: The majority of interventions did not cite a guiding theoretical framework or cited multiple theories with overlapping domains. The TDF was a reliable categorization system and suggested that pediatric adherence-promotion interventions most commonly target knowledge, skills, and social influences. CONCLUSIONS: Pediatric adherence-promotion interventions draw from a variety of theories and lack a consistent language for describing targeted domains. The adapted TDF proposed here is one method of reducing variability in intervention development and reporting and may facilitate efforts to identify the processes that improve adherence.

Commentary: demonstrating cost-effectiveness in pediatric psychology.

OBJECTIVE: Changes in the health care system and payment plans will likely require pediatric psychologists to illustrate the impact of their services. Cost-effectiveness analyses are one method of demonstrating the potential economic benefits of our services but are rarely used by pediatric psychologists. METHOD: A hypothetical cost-effectiveness analysis was conducted, comparing the costs and outcomes between a behavioral adherence intervention and no intervention for youth with acute lymphoblastic leukemia. RESULTS: Results illustrate how pediatric psychologists can use cost-effectiveness analyses to demonstrate the economic impact of their work. CONCLUSIONS: Efforts to conduct economic analyses could allow pediatric psychologists to advocate for their services. Implications and future directions are discussed.