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.

Body Image Concerns in Adolescent and Young Adult Oncology Patients within Six Months of Upfront Diagnosis.

This cross-sectional study described prevalent body image (BI) concerns among adolescents and young adults (AYAs) with neoplasms who received treatment at a quaternary care children's hospital. Thirty-two AYAs, aged 15-39 years, completed questionnaires assessing BI within six months of diagnosis. The most frequently endorsed questionnaire items included the following: desire for increased physical fitness (62.5%), self-consciousness about hair (45.2%), weight dissatisfaction (40.6%), lack of strength (37.5%), wearing loose clothing to hide one's body (37.5%), decreased agility (34.4%), shape dissatisfaction (32.2%), and self-perception of too much body fat (31.3%). Awareness of AYA BI concerns during treatment may generate early intervention targeting this complex issue.

Evaluation, analysis, and reporting of medication adherence for clinical trials of anticoagulants in children: guidance from the ISTH SSC Subcommittee on Pediatric and Neonatal Thrombosis and Hemostasis.

In response to growing recognition that nonadherence prevents children, adolescents, and young adults from achieving the therapeutic benefits of anticoagulant medication, the International Society on Thrombosis and Haemostasis Scientific and Standardization Committee Subcommittee on Pediatric and Neonatal Thrombosis and Hemostasis convened a working party on medication adherence. The primary aim of this article was to synthesize recommendations from the larger adherence science literature to provide guidance regarding the classification, collection, and interpretation of anticoagulation adherence data. The secondary aim of this article was to evaluate the degree to which trials published from 2013 to 2023 adhered to these guidance recommendations. As less than half of all trials reported on adherence and none included all recommended elements, the proposed International Society on Thrombosis and Haemostasis Scientific and Standardization Committee guidance has the potential to enhance the rigor and reproducibility of pediatric anticoagulant research.

Factors influencing caregiver decisions to use complementary and integrative therapies in pediatric oncology settings: Findings from a qualitative analysis.

PURPOSE: Complementary and integrative medicine (CIM) therapies (i.e., non-conventional Western medicine interventions) may reduce side-effects associated with pediatric oncology treatment. CIM therapies may also improve caregiver psychological and physical health that is exacerbated during pediatric cancer treatment. Despite known benefits, these therapies are not widely used within pediatric oncology populations in the United States. To guide and promote CIM use among this population, the aim of this project was to qualitatively explore factors that contribute to caregivers' decision to include CIM use in their own and child's care. METHODS: Twenty caregivers of children (ages 0.5-14 years) being treated for cancer participated in this study. Each completed a demographic form and the CIM use questionnaire. Qualitative interviews followed by a card sort task were used to assess barriers and facilitators of uptake for caregivers and their child with cancer. RESULTS: A number of predisposing (e.g., child age, beliefs) and needs factors (e.g., potential to treatment-related side-effects) provide insight into caregivers' decisions to use CIM for their child. Analyses also revealed the importance of enabling factors (e.g., resources) for caregiver use. Caregivers also reported benefiting from additional information about risk/benefit analysis of these therapies, and current research for CIM use in caregivers and children being treated for cancer. CONCLUSION: Children may benefit from individually tailored complementary and integrative medicine consultations that explore patient history and specific needs factors to improve preference concordant care and uptake. Caregivers may benefit from support that improves enabling factors associated with care (e.g., improved accessibility).

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.

Feasibility pilot trial of a tailored medication adherence-promotion intervention for adolescents and young adults with cancer: Study design and protocol.

BACKGROUND: Medication non-adherence is common among adolescents and young adults (AYAs) with cancer and associated with poor health outcomes. AYAs with cancer endorse multiple barriers to adherence that differ across individuals, suggesting that tailoring intervention content to an AYA's specific barriers may have the potential to improve adherence. The purpose of this manuscript is to report on ORBIT-guided Phase I design efforts to create the first tailored adherence-promotion intervention for AYAs with cancer and the study protocol for the ongoing Phase II pilot feasibility trial. METHODS: Phase I design included qualitative interviews (n = 15 AYAs) to understand patient preferences for adherence-promotion care, development and refinement of a best-worst scaling exercise barriers tool (n = 5 AYAs), and development of intervention modules and a tailoring algorithm. In the ongoing Phase II pilot feasibility trial, AYAs (ages 15-24 years) with cancer currently taking oral chemotherapy or prophylactic medication will be recruited from three children's hospitals. Feasibility, acceptability, and usability will be assessed and these outcomes along with data on medication adherence will be used to inform the next phases of intervention development and testing. CONCLUSIONS: If promising, this program of research ultimately has the potential to equip clinicians with additional strategies for supporting adherence among AYAs with cancer. NCT05706610.

Ethical considerations in using sensors to remotely assess pediatric health behaviors.

Sensors, including accelerometer-based and electronic adherence monitoring devices, have transformed health data collection. Sensors allow for unobtrusive, real-time sampling of health behaviors that relate to psychological health, including sleep, physical activity, and medication-taking. These technical strengths have captured scholarly attention, with far less discussion about the level of human touch involved in implementing sensors. Researchers face several subjective decision points when collecting health data via sensors, with these decisions posing ethical concerns for users and the public at large. Using examples from pediatric sleep, physical activity, and medication adherence research, we pose critical ethical questions, practical dilemmas, and guidance for implementing health-based sensors. We focus on youth given that they are often deemed the ideal population for digital health approaches but have unique technology-related vulnerabilities and preferences. Ethical considerations are organized according to Belmont principles of respect for persons (e.g., when sensor-based data are valued above the subjective lived experiences of youth and their families), beneficence (e.g., with sensor data management and sharing), and justice (e.g., with sensor access and acceptability among minoritized pediatric populations). Recommendations include the need to increase transparency about the extent of subjective decision making with sensor data management. Without greater attention to the human factors involved in sensor research, ethical risks could outweigh the scientific promise of sensors, thereby negating their potential role in improving child health and care. (PsycInfo Database Record (c) 2024 APA, all rights reserved).

Psychological Outcomes in Adolescent and Young Adult Cancer Survivors.

The diagnosis of cancer during adolescent and young adulthood (AYA) may alter the development and psychological trajectory of survivors across their lifespan. The current review focuses broadly on emotional health, social functioning, health behaviors, and cancer-related cognitive impairment (CRCI) among AYA survivors. Overall, AYA survivors appear to be at elevated risk of emotional distress symptoms, mood and anxiety disorders, suicide, and mental health care service utilization compared with individuals without a cancer history. Difficulties with social relationships and reduced achievement of expected social outcomes including educational attainment and employment have been reported. Despite risk for health-related morbidities, including subsequent neoplasms, many AYA survivors do not engage in health behaviors at the recommended levels for physical activity, diet, or tobacco and alcohol use. Although CRCI has not been comprehensively characterized in this population, subgroups of AYA survivors appear to be at risk for experiencing CRCI, including survivors of central nervous system tumors, Hodgkin lymphoma, testicular, and breast cancer. Across each considered domain of psychological functioning, intervention efforts have largely focused on acceptability and feasibility with an increasing focus on e/mHealth approaches. Future research should include multiphase studies, including randomized controlled trials designed to evaluate intervention efficacy and effectiveness. It is imperative that psychological interventions consider the unique needs of AYA survivors by developmental stage and across multiple levels of influence (patient, support system, institution, and health care system).

Feasibility of Electronic Medication Monitoring Among Adolescents and Emerging Adults with Sickle Cell Disease.

Purpose: To examine the feasibility of using MEMS® bottles to assess adherence among adolescents and emerging adults with sickle cell disease. Patients and Methods: Eighteen non-Hispanic Black participants with HbSS (M = 17.8 years; 61% male) were given a MEMS® bottle to store hydroxyurea (n = 14) or deferasirox (n = 4). Results: One hundred percent initiated MEMS® use and 61% sustained use through the 18-week study; at follow-up, only 11% returned their bottle on time. Barriers to MEMS® use included medication changes and transition to adult care; facilitators included tip sheets and reminders. Conclusion: While MEMS® is acceptable to this population, ensuring sustained use and timely provision of bottles will require additional supports.

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.

Systematic Evaluation of the Behavior Change Techniques and Quality of Commercially Available Cancer Self-Management Apps.

PURPOSE: Apps have the potential to aid in cancer self-management, but there is limited guidance available for selecting among currently available options. The purpose of this study is to evaluate the behavior change techniques (BCTs) and quality of publicly available cancer self-management apps. METHODS: Cancer self-management apps were identified from the Apple and Google Play stores in April 2022. Trained study team members coded the BCTs included in each app and rated its quality using the Mobile App Rating Scale (MARS). BCTs supported by previous literature were coded as cancer management BCTs. RESULTS: The 39 apps meeting inclusion criteria included an average of 5.85 BCTs (standard deviation [SD], 3.49; range, 0-15) and 3.54 cancer management BCTs (SD, 1.90; range, 0-8). The most commonly included BCTs were educational or informational strategies: provide information about behavior-health link, provide instruction, and provide information on consequences. The overall app quality ranged from 1.69 to 4.20 (M, 3.29; SD, 0.67). CONCLUSION: No cancer self-management apps were of excellent quality, and less than half included multiple cancer management BCTs beyond education. Clinical implications are discussed, and opportunities to improve the content and quality of apps to address the critical self-management needs of patients diagnosed with cancer are highlighted.

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.

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.

Results of an international survey on adherence with anticoagulation in children, adolescents, and young adults: Communication from the ISTH SSC Subcommittee on Pediatric and Neonatal Thrombosis and Hemostasis.

BACKGROUND: The ISTH Scientific and Standardization Committee (SSC) Subcommittee on Pediatric/Neonatal Thrombosis and Hemostasis convened a working group on medication adherence to begin to understand the current state of clinical practice to inform priority areas for efforts to improve adherence for children, and adolescents and young adults (AYA) prescribed anticoagulants. OBJECTIVES: We sought to survey an international group of clinicians involved in anticoagulation management in children and/or AYA about perceptions of medication on health outcomes, clinical practice related to medication adherence, and barriers to assessing and improving medication adherence. METHODS: Clinicians involved in anticoagulation management in children and/or AYA were surveyed via REDCap® . Descriptive statistics were used to summarize demographic and clinical characteristics and responses to multiple choice and Likert-type questions. Free-text answers were coded based on the Behaviour Change Technique Taxonomy and the Expert Recommendations for Implement Change project. RESULTS AND CONCLUSIONS: There were 200 participants, 90% of whom were pediatric hematology/oncology physicians. Based on the results, which demonstrate that clinicians are concerned about impact of poor medication adherence and have limited resources to identify and improve adherence, the working group has identified next steps to further understand impact of medication adherence on anticoagulation-related health outcomes, address the need for validated measures to assess medication adherence for all anticoagulants prescribed to this population, and develop an intervention and implementation research agenda to improve outcomes.

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.

Adherence and Barriers to Inpatient Physical Therapy Among Adolescents and Young Adults with Hematologic Malignancies.

This study described inpatient physical therapy (PT) adherence and barriers to inpatient PT among adolescents and young adults (AYAs) with hematologic malignancies receiving care at a Midwestern children's hospital. Forty-seven AYAs receiving care over a 2-year period were included. PT contact was established in 93% of hospitalizations. AYAs declined an average of 34% of PT visits, resulting in PT visits on 27% of hospitalized days, 1 day less than the goal of 3 days a week. The most frequent reasons for decline included: AYA sleeping (22%), AYA undergoing medical procedure (18%), and AYA not feeling well (12%).

Systematic Review of Substance Use Measurement Tools in Adolescent and Young Adult Childhood Cancer Survivors.

Substance use among adolescents and young adults (AYAs) is associated with an increased risk of poor physical and mental health outcomes. For AYA childhood cancer survivors (CCSs), substance use may also increase their likelihood of experiencing late effects. As a result, professional organizations recommend that AYA CCSs be regularly screened for risk behaviors, including substance use. The best methods for assessing these behaviors as part of clinical care for AYA CCSs, however, remain unclear. To begin to address this gap, the purpose of this study was to systematically review written substance use measures that have been used with AYA CCSs and published between 2000 and 2020. A search of PubMed, PsycINFO, and CINAHL using terms related to substance use and AYA CCSs identified 47 articles representing 20 different written substance use measures that evaluated current substance use (i.e., use of alcohol, tobacco, marijuana, prescription medications taken in a manner other than as prescribed, and/or other illicit substances within the 12 months). Measures varied in domains assessed, item formats, and response formats. Results are presented alongside recommendations for selecting screening tools for use with AYA CCS populations in both clinical and research settings.

Effects of Loss and Gain Incentives on Adherence in Pediatric Weight Management: Preliminary Studies and Economic Evaluation of a Theoretical Trial.

Pediatric weight management is often hampered by poor engagement and adherence. Incentives based on loss have been shown to be more effective than gain-based incentives in improving outcomes among children with health conditions other than obesity. In preparation for a clinical trial comparing loss-framed to gain-framed incentives, a survey of youth and caregiver attitudes on weight management incentives, reasons for program attendance, and an economic evaluation of a theoretical trial were conducted. Ninety of 835 (11%) surveys were completed by caregiver and child. The economic evaluation showed that loss-framed incentives had a preferable incremental cost-effectiveness ratio (a lower value is considered preferable) than gain-based incentives. Most youth and caregivers felt a gain incentive would be superior, agreed that the full incentive should go to the youth (vs. the caregiver), and identified "improving health" as a top reason for pursuing weight management.