COVID-19-Related Misinformation among Parents of Patients with Pediatric Cancer.

We conducted a survey among 735 parents to determine differences in endorsement of misinformation related to the coronavirus disease pandemic between parents of children in cancer treatment and those with children who had no cancer history. Parents of children with cancer were more likely to believe misinformation than parents of children without cancer.

Ethical considerations in pediatric chronic illness: The relationship between psychological factors, treatment adherence, and health outcomes.

Children, adolescents, and young adults with chronic illnesses are often faced with complicated and burdensome treatments that not only require a great deal of time and energy to manage, but will also likely impact relationships with parents, siblings, and peers. Adolescents and young adults with chronic illness are often impacted by several unique and challenging factors that can ultimately impact health behaviors and treatment outcomes. Working with a psychologist can help to ameliorate these unique challenges, which will positively impact health behaviors and health outcomes. The present paper provides an overview of psychological interventions that were designed to target the unique challenges that are often associated with maladaptive health behaviors and ultimately poor health outcomes. As demonstrated in this commentary, when working with adolescents and young adults who have unique developmental challenges, it is important to deliver multi-faceted intervention approaches that utilize a number of different strategies and frameworks. These eclectic intervention approaches provide a unique opportunity to improve health behaviors during critical developmental periods, including the transition from childhood to adolescence to young adulthood.

Assessment of tacrolimus intrapatient variability in stable adherent transplant recipients: Establishing baseline values.

The purpose of this study was to determine the intrapatient (within the same patient) variability of tacrolimus in adherent patients. Daily tacrolimus trough levels were obtained at home using dried blood spot technology in kidney and liver transplant recipients. Patients were randomized to receive 3 formulations of tacrolimus, each for two 1-week periods. Adherence was monitored by patient diary, pill counts, and use of the Medication Event Monitoring System (MEMS). Variability was quantified as the coefficient of variation (CV). Comparison of CV between groups was by independent t test or one-way ANOVA as appropriate. The population was found to be adherent with a rate of 99.9% with a mean interval between the evening and morning dose of tacrolimus of 11.86 hours. The median CV for the entire population was 15.2% (range 4.8%-110%). There were no differences in CV by allograft type or tacrolimus formulation. The multivariate analysis did not identify any demographic characteristics associated with a CV > 30%. In a highly adherent population, tacrolimus did not display high intrapatient variability. Given the association between IPV and poor allograft outcomes, future studies are needed to quantitate the influence of adherence and establish target IPV goals.

Featured Article: Comparison of Diabetes Management Trajectories in Hispanic versus White Non-Hispanic Youth with Type 1 Diabetes across Early Adolescence.

OBJECTIVE: Ethnic minority youth with type 1 diabetes (T1D) often have poorer glycemic control and lower rates of adherence compared to White Non-Hispanic (WNH) youth. Variables such as family conflict, autonomy support, and youth regimen responsibility have been shown to change over adolescence and impact diabetes management. However, these factors have been investigated in predominantly White samples. Few studies have examined potential differences in these variables and their trajectories for Hispanic youth over early adolescence. METHODS: Youth with T1D (178 WNH and 33 Hispanic youth participants), as well as their maternal caregivers (174 WNH and 32 Hispanic maternal caregivers), completed measures of diabetes-specific autonomy support, diabetes-related family conflict, regimen responsibility, and blood glucose monitoring frequency at 4 timepoints over a 3-year period. RESULTS: At baseline, Hispanic youth had significantly poorer glycemic control, more family conflict, and fewer blood glucose checks on average compared to WNH youth. Similar to WNH youth, Hispanic youth have increasing independence for regimen tasks and decreasing parent autonomy support during this developmental period. However, while Hispanic youth had worsening diabetes management during early adolescence (as did WNH youth), Hispanic parents reported a more gradual change in youth's diabetes management over early adolescence. CONCLUSIONS: This study presents an important contribution to the existing literature on youth with T1D. Findings suggest potential strengths and targets for Hispanic youth navigating diabetes management during the adolescent period. It is important to continue to investigate the trajectories of ethnic minority youth with diabetes.

Measuring Medication Adherence in Pediatric Cancer: An Approach to Validation.

Objective: This study described the prospective relationship between pharmacological and behavioral measures of 6-mercaptopurine (6MP) medication adherence in a multisite cohort of pediatric patients diagnosed with cancer ( N = 139). Methods: Pharmacological measures (i.e., metabolite concentrations) assessed 6MP intake. Behavioral measures (e.g., electronic monitoring) described adherence patterns over time. Results: Three metabolite profiles were identified across 15 months: one group demonstrated low levels of both metabolites (40.8%) consistent with nonadherence and/or suboptimal therapy; two other groups demonstrated metabolite clusters indicative of adequate adherence (59.2%). Those patients whose metabolite profile demonstrated low levels of both metabolites had consistently lower behavioral adherence rates. Conclusions: To our knowledge, this was the first study to prospectively validate a pharmacological measure of medication adherence with a behavioral adherence measure in a relatively large sample of pediatric patients with cancer. Using multiple methods of adherence measurement could inform clinical care and target patients in need of intervention.

A 3-year prospective study of parent-child communication in early adolescents with type 1 diabetes: relationship to adherence and glycemic control.

OBJECTIVE: To examine changes in parent-child communication patterns and their relation to glycemic control and treatment adherence using observational data in a 3-year prospective multisite study of youth with type 1 diabetes aged 9-11 years at baseline and their families (n = 217). METHODS: Adolescents and caregivers participated in a diabetes problem-solving discussion. Families were rated on negative and positive communication and interactions using the Interaction Behavior Code. RESULTS: Maternal and paternal negative communication decreased over time, whereas adolescent and maternal positive communication and positive reciprocity increased. Baseline preadolescent youth and maternal positive communication predicted adherence 3 years later. Changes in family communication did not predict changes in glycemic control or adherence. CONCLUSIONS: During the transition to adolescence, family communication changed in unexpected and positive ways. Additionally, the relationship of baseline family communication to subsequent adherence suggests the need to assess family communication concerning diabetes-related management during preadolescence.

Predicting Health Resilience in Pediatric Type 1 Diabetes: A Test of the Resilience Model Framework.

OBJECTIVES: This research examined whether individual and family-level factors during the transition from late childhood to early adolescence protected individuals from an increased risk of poor glycemic control across time, which is a predictor of future diabetes-related complications (i.e., health resilience). METHODS: This longitudinal, multisite study included 239 patients with type 1 diabetes and their caregivers. Glycemic control was based on hemoglobin A1c. Individual and family-level factors included: demographic variables, youth behavioral regulation, adherence (frequency of blood glucose monitoring), diabetes self-management, level of parental support for diabetes autonomy, level of youth mastery and responsibility for diabetes management, and diabetes-related family conflict. RESULTS: Longitudinal mixed-effects logistic regression indicated that testing blood glucose more frequently, better self-management, and less diabetes-related family conflict were indicators of health resilience. CONCLUSIONS: Multiple individual and family-level factors predicted risk for future health complications. Future research should develop interventions targeting specific individual and family-level factors to sustain glycemic control within recommended targets, which reduces the risk of developing future health complications during the transition to adolescence and adulthood.

Electronic monitoring of medication adherence in early maintenance phase treatment for pediatric leukemia and lymphoma: identifying patterns of nonadherence.

OBJECTIVE: To describe patterns of treatment adherence to early maintenance phase therapy for acute lymphoblastic leukemia (ALL) and lymphoblastic lymphoma (LBL). METHODS: Using an objective observational method (electronic monitoring), adherence was examined for 139 patients aged 7-19 years diagnosed with ALL or LBL across 6 centers. RESULTS: The mean adherence percentage was 86.2%. Adherence rates declined over the 1-month of follow-up to 83%. 3 linear trajectories of 6-mercaptopurine adherence were identified: (1) exemplary adherence (n = 99): Averaging nearly 100%; (2) deteriorating (n = 23): Adherence decreased from 100 to 60%; and (3) chronically poor adherence (n = 9): Averaging 40%. CONCLUSIONS: Adherence promotion interventions might be tailored to subgroups of patients who demonstrated problematic patterns of treatment adherence that could place them at risk for relapse. This research demonstrates the importance of using objective real-time measures of medication adherence for measuring and documenting adherence patterns.

Patterns and predictors of paternal involvement in early adolescents' type 1 diabetes management over 3 years.

OBJECTIVE: To document trajectories of paternal involvement in diabetes management and examine bidirectional associations with diabetes outcomes across early adolescence. METHODS: 3-year prospective assessment of paternal involvement, diabetes self-management, and glycemic control among 136 youth (age 9-12 at baseline) and their mothers and fathers. RESULTS: Unconditional growth curves demonstrated decreasing amount (maternal report: F(1,128) = 14.79; paternal report: F(1,111) = 12.95, ps < 0.01) and level of contribution (maternal report: F(1,131) = 23.6, p < .01) of paternal involvement. Controlling for covariates, lower youth self-management predicted an increasing slope in fathers' self-reported amount of involvement (b = -0.15 to -0.22, p < .05), and higher levels of fathers' self-reported level of contribution predicted a decreasing slope in youths' self-reported self-management (b = -0.01, p < .05). CONCLUSIONS: Like mothers, fathers' involvement declines modestly during early adolescence. Different aspects of paternal involvement influence or are influenced by youths' self-management. Communication about ways to enhance fathers' involvement before this transition may help prevent or reduce declining diabetes management and control common in adolescence.

A meta-analysis of adherence to antiretroviral therapy and virologic responses in HIV-infected children, adolescents, and young adults.

The relationship between adherence to antiretroviral therapy (ART) and virologic outcomes in HIV+ children, adolescents, and young adults has been notably understudied, with much of the extant research focused on specific sub-literatures, such as resource-limited regions, specific clinical outcomes and time frames. The authors sought to better characterize the relationship between adherence to ART and virologic functioning along various sample and methodological factors. The authors conducted a meta-analysis of thirty-seven studies and utilized a random effects model to generate weighted mean effect sizes. In addition, the authors conducted meta-ANOVAs to examine potential factors influencing the relationship between adherence and three categories of clinical outcomes, specifically Viral Load (VL) <100, VL < 400, and continuously measured VL. The analyses included 5,344 HIV+ children, adolescents, and young adults. The relationship between adherence behaviors and virologic outcomes varied across different methods of measurement and analysis. The relationship between adherence and continuously measured VL was significantly larger than for dichotomously-coded VL < 400 at Qb (20.69(1), p < .0005). Caregiver self-report indices elicited very small to small magnitude effects across both VL < 100 and VL < 400 outcomes and combined informant reporting (youth/adolescent and parent) produced significantly larger effects than caregiver report alone with adherence and VL < 400 outcomes at Qb (9.28(1), p < .005). More recently published trials reported smaller relationships between adherence and categorical clinical outcomes, such that year of publication significantly negatively correlated with VL < 100 (r = -.71(14), p < .005) and VL < 400 (r = -.43(26), p < .02). The data suggest that the magnitude of the relationship between ART adherence and virologic outcomes among heterogeneous samples of HIV+ children, adolescents and young adults varies across virologic outcomes and may be affected by moderating sample and methodological factors. Methodological and research recommendations for the interpretation of the current findings as well as for future HIV adherence related research are presented.

Clinical effectiveness of comprehensive psychological intervention for nonadherence to medical treatment: a case series.

OBJECTIVE: To evaluate the effectiveness of an adherence promotion intervention provided to patients and families referred to a clinical service. METHODS: 6 patients and their caregivers representing 5 different chronic conditions were seen for comprehensive psychological intervention that was evaluated based on electronic monitoring of adherence to prescribed oral medication. RESULTS: Time series analysis (Auto-Regressive Integrated Moving Average) indicated that for each of the 6 cases, treatment adherence increased during the intervention phase relative to nonintervention periods, but for 5 of these 6 patients, adherence decreased during the follow-up period (p < .05). CONCLUSION: Comprehensive adherence promotion strategies delivered in standard clinical practice were effective, but the effects did not persist after treatment. Future adherence promotion interventions should focus on sustaining intervention effects.

Changes in executive functioning and self-management in adolescents with type 1 diabetes: a growth curve analysis.

OBJECTIVE: To investigate the relation of changes in executive functioning to changes in diabetes self-management in a 2-year prospective study of a sample of youth aged 9-11 years at baseline (n = 239) with type 1 diabetes and their maternal caregivers. RESEARCH DESIGN AND METHODS: Youth and maternal caregivers completed the Diabetes Self-Management Profile (DSMP) at baseline, 12 months, and 24 months. Maternal caregivers completed the Behavioral Rating Inventory of Executive Functioning (BRIEF) at the same time points to assess global executive functioning, and the domains of behavioral regulation and metacognition. RESULTS: Youth reported self-management decreased over time (p < .01) while behavioral regulation (e.g., the child's ability to shift cognitive set and moderate emotions and behaviors via emotional control) increased (p < .05). Changes in behavioral regulation significantly predicted rate of change in youth-reported self-management (p < .01). Global executive functioning and metacognition (e.g., the child's ability to monitor, initiate, plan, organize, and sustain future-oriented problem solving and working memory) did not change over time and did not predict changes in self-management. Moreover, executive functioning and self-management did not predict changes in HbA1c. CONCLUSIONS: Positive changes in behavioral regulation may enhance self-management of type 1 diabetes during the transition to adolescence.

Pediatric psychologist use of adherence assessments and interventions.

OBJECTIVE: To document current clinical practices for medical regimen adherence assessment and intervention in the field of pediatric psychology. METHODS: 113 members of the Society of Pediatric Psychology completed an anonymous online survey that assessed use of adherence assessments and interventions in clinical practice, barriers and facilitators to their use, and preferred resources for obtaining information on adherence assessments and interventions. RESULTS: Respondents reported using a range of adherence assessment and intervention strategies, some of which are evidence-based. Barriers to implementing these clinical strategies included time constraints and lack of familiarity with available clinical tools. Respondents reported that education about effective clinical tools would facilitate their use of adherence assessments and interventions. CONCLUSIONS: Future research and clinical efforts in adherence should consider developing practical tools for clinical practice, making accessible resources to promote dissemination of these tools, and increase understanding of clinician implementation of adherence assessments and interventions.

Diabetes management and glycemic control in youth with type 1 diabetes: test of a predictive model.

The objective of this study was to test a comprehensive model of biologic (pubertal status), family (communication and conflict), and psychological influences (behavioral autonomy) on diabetes management and glycemic control in a sample of youth (N = 226) with type 1 diabetes recruited during late childhood/early adolescence (ages 9-11 years). The study design was a prospective, multisite, multi-method study involving prediction of diabetes management and glycemic control 1 year post-baseline. The primary outcome measures included diabetes management behaviors based on the Diabetes Self-Management Profile (DSMP) administered separately to mothers and youth and glycemic control measured by glycated hemoglobin (HbA1c) obtained by blood samples and analyzed by a central laboratory to ensure standardization. Our hypothesized predictive model received partial support based on structural equation modeling analyses. Family conflict predicted less adequate glycemic control 1 year later (p < 0.05). Higher conflict predicted less adequate diabetes management and less adequate glycemic control. More advanced pubertal status also predicted less adequate glycemic control, but behavioral autonomy did not. Family conflict is an important, potentially clinically significant influence on glycemic control that should be considered in primary and secondary prevention in the management of type 1 diabetes in youth.

Diabetes self-management profile short form: a preliminary report.

Effective family management of type 1 diabetes in childhood is critical to maintaining optimal glycemic control. The purpose of this study was to provide preliminary evidence for a reduced form of the Diabetes Self-Management Profile (DSMP) using Rasch modeling techniques. The study was a secondary analysis of DSMP data drawn from a previous study on patterns of self-management from 239 preadolescents with type 1 diabetes. Rasch modeling strategies were used to identify the most informative items and then a reduced score composite was correlated with hemoglobin A1c (A1c) and blood glucose monitoring (BGM) frequency. A short form of the DSMP was obtained using seven items that comprised all five subscales of the DSMP. The DSMP Short-Form (DSMP-SF) composite score correlated significantly with child's HbA1c and BGM frequency. The DSMP-SF may be considered a valid and effective screening interview alternative to the longer, original, DSMP, particularly when attempting to identify high-risk patients.

Identification of self-management patterns in pediatric type 1 diabetes using cluster analysis.

OBJECTIVES: This study identified three distinct patterns of self-management groups for a sample of 239 youth (9-11 years) with type 1 diabetes and their maternal and paternal caregivers, and assessed their relationship to glycemic control (HbA1c). METHODS: Youth and their maternal and paternal caregivers were administered the diabetes self-management profile (DSMP) to assess self-management. Glycemic control was based on hemoglobin A1c. RESULTS: Two-step cluster analysis identified three different self-management groups based on youth, maternal, and paternal reports. Analysis of variance indicated that the pattern of less optimal diabetes self-management was associated with worse glycemic control. CONCLUSION: Our results objectively describe differences in patterns of self-management in youth with type 1 diabetes, that relate to glycemic control. Interventions based on these specific patterns of self-management may improve diabetes management and enhance glycemic control in children and adolescents with type 1 diabetes.

Fathers' involvement in preadolescents' diabetes adherence and glycemic control.

OBJECTIVE: To examine the relationship of paternal involvement in diabetes care with adherence and glycemic control. METHODS: One hundred and thirty-six mothers and fathers of preadolescents (aged 9-12 years) with type 1 diabetes reported on paternal involvement. Adherence was measured by interview and blood glucose meter downloads. Mothers' and fathers' ratings of paternal involvement in diabetes care were compared. We evaluated three structural equation models linking paternal involvement with adherence and glycemic control. RESULTS: Mothers and fathers reported similar amounts of paternal involvement, yet mothers rated paternal involvement as more helpful. The data supported a model indicating links between more paternal involvement and higher HbA1c and between lower adherence and higher HbA1c. Mediation and moderation models were not supported. DISCUSSION: Although paternal involvement was not directly associated with treatment adherence, it was associated with poorer glycemic control. Some fathers may increase their involvement in response to suboptimal glycemic outcomes.

Adherence to pediatric asthma treatment in economically disadvantaged African-American children and adolescents: an application of growth curve analysis.

OBJECTIVES: The primary aims of the study were to: (a) describe the trajectories of adherence to daily inhaled corticosteroid (ICS) medication for a year in economically disadvantaged, African-American youth with asthma based on growth curve modeling; and (b) test the relationship of treatment adherence to symptom control, quick-relief medication, and healthcare utilization. METHODS: This prospective study measured adherence to daily ICS treatment using electronic monitoring in 92 children and adolescents with moderate to severe asthma for 9-12 months and assessed clinical outcomes, including asthma-related symptoms, quick-relief medication, and healthcare utilization. RESULTS: Youth showed a decrement in treatment adherence to less than half of prescribed corticosteroid treatment over the course of the study, which related to increased healthcare utilization (p < .04), but not to asthma symptoms or albuterol use. CONCLUSION: Economically disadvantaged youth with asthma demonstrate high rates of chronic nonadherence that warrant identification and intervention to reduce asthma-related healthcare utilization.

Examination of Transition Readiness, Medication Adherence, and Resilience in Pediatric Chronic Illness Populations: A Pilot Study.

The present study assessed the relationship between resilience, adherence, and transition readiness in adolescents/young adults with chronic illness. Participants included 50 patients (Mean age, Mage = 17.3 ± 2.1 years) diagnosed with an oncology disorder (n = 7; 12.1%), hematology disorder (n = 5; 8.6%), nephrology disorder (n = 31; 53.4%), or rheumatology disorder (n = 7; 12.1%). Patients were administered questionnaires assessing resilience (Conner-Davidson Resilience Scale 25-item questionnaire, CD-RISC-25), transition readiness (Self-Management and Transition to Adulthood with Rx=Treatment, STARx), and self-reported medication adherence (Medication Adherence Module, MAM). Medical chart reviews were conducted to determine objective medication adherence rates based on pharmacy refill history (medication adherence ratios). A multivariate correlation analysis was used to examine the relationship between resilience, transition readiness, and adherence. There was a moderate relationship (r = 0.34, p ≤ 0.05) between resilience (M = 74.67 ± 13.95) and transition readiness (M = 67.55 ± 8.20), such that more resilient patients reported increased readiness to transition to adult care. There also was a strong relationship (r = 0.80, p ≤ 0.01) between self-reported medication adherence (M = 86.27% ± 15.98) and pharmacy refill history (Mean Medication Adherence Ratio, MMAR = 0.75 ± 0.27), which indicated that self-reported adherence was consistent with prescription refill history across pediatric illness cohorts. Our findings underscore the importance of assessing resilience, transition readiness, and adherence years before transitioning pediatric patients to adult providers to ensure an easier transition to adult care.

Psychological Considerations in Pediatric Chronic Illness: Case Examples.

Abstract: Despite significant gains in survival rates for pediatric patients and adolescents/young adults (AYA) with chronic illness, patients in this vulnerable age group are also at an increased risk for developing one or more adverse effects related to their disease, treatment, or maladaptive health behaviors. Maladaptive health behaviors ultimately increase the risk for developing adverse effects, including: increased rates of morbidity and mortality, impaired physical functioning, increased fatigue, obesity, increased psychological distress, and poor quality of life. With close attention including participation in preventive and therapeutic health promotion interventions, problematic health behaviors can be mitigated and ultimately prevented over time. It is well known that improved psychological functioning and adaptive coping can result in improved health status. The present paper provides four case examples illustrating various psychological interventions in pediatric chronic illness. As evidenced in the four case examples, pediatric psychologists provide comprehensive interventions for patients with acute and chronic medical conditions through the use of health promotion interventions, adherence and self-management promotion, cognitive behavioral therapy, behavioral therapy, medical coping, parent training, and motivational interviewing. Our case series demonstrates that for the most impactful behavior change to occur, a combination of interventions is often the most effective.