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.

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.

The Relationship between Health Disparities, Psychosocial Functioning and Health Outcomes in Pediatric Hematology-Oncology and Stem Cell Transplant Populations: Recommendations for Clinical Care.

Not only do racial and ethnic minority children and adolescents with chronic illness experience disparities in health status and health outcomes, they also experience significant healthcare disparities, including differences in healthcare coverage, access to care, and quality of care. It is well known that the interaction between psychosocial functioning, health behaviors and ethnic and racial disparities, ultimately leads to worse health and psychosocial outcomes in pediatric and AYA chronic illness patient populations, including increased rates of morbidity and mortality. Investigating the impact of racial and ethnic factors on health outcomes, and strategies for reducing these disparities, is of the utmost importance, specifically in life-threatening conditions like cancer and sickle cell disease.

When Multiple Objective Measures of Medication Adherence Indicate Incongruent Adherence Results: An Example with Pediatric Cancer.

Previous research suggests that children and adolescents with acute lymphoblastic leukemia (ALL) and lymphoblastic lymphoma (LBL) often have difficulty adhering to complex treatment regimens during the maintenance phase of therapy. Measurement of treatment adherence can be done via objective (e.g.

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, = 17.3 ± 2.

Psychological Considerations in Pediatric Chronic Illness: Case Examples.

t: 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.

Longitudinal Patterns of Social Problem-Solving Skills in an Ethnically Diverse Sample of Pediatric Patients with Cancer and their Caregivers.

Pediatric patients with acute lymphoblastic leukemia and lymphoblastic lymphoma are prescribed a daily oral chemotherapy medication named 6-mercaptopurine. Adherence to this medication is vital for survival and decreased risk for disease relapse. Adaptive problem-solving strategies are important for adhering to this complex regimen.

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.

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.

A Randomized Trial of User-Controlled Text Messaging to Improve Asthma Outcomes: A Pilot Study.

We enrolled 64 patients age 12 to 22 years with a diagnosis of poorly controlled persistent asthma in a 6-month longitudinal crossover study. During the 3 intervention months, participants created personalized text messages to be sent to their phones. Adherence was objectively monitored in 22 of the participants.

Medically Hospitalized Patients With Eating Disorders and Somatoform Disorders in Pediatrics: What Are Their Similarities and Differences and How Can We Improve Their Care?

Objectives: The purpose of the current study is to describe the demographic and clinical characteristics and health care use of medically hospitalized patients with eating disorders (ED) and somatoform disorders (SFD) in a pediatric setting and to use the findings to explore opportunities for improved care.

Methods: Retrospective chart reviews of 125 patients with SFD and 125 patients with ED (N = 250) seen at a tertiary pediatric facility over a 12- and 19-month period, respectively.

Results: Patients in both groups were predominantly girls, white, came from households with above average incomes, and had academic pressures, internalizing coping styles, and high rates of anxiety disorders.

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.

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).

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.

Autonomy support and responsibility-sharing predict blood glucose monitoring frequency among youth with diabetes.

Objective: Adolescence poses a number of special challenges for youth and their families managing the Type 1 diabetes medical regimen. Little is known on how family and youth factors and management of the regimen change over the course of early adolescence and predict adherence to the regimen during this developmental period.

Methods: Youth with Type 1 diabetes (n = 239) and their maternal caregivers completed measures of diabetes-specific autonomy support, diabetes-related family conflict, regimen responsibility, and blood glucose monitoring frequency (BGMF) at 4 timepoints over a 3-year period.

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.

Identification and prediction of group-based glycemic control trajectories during the transition to adolescence.

Objective: To identify trajectories of glycemic control over a period of 3 years in a pediatric sample of youth diagnosed with Type 1 diabetes transitioning to adolescence. A second aim was to examine a set of modifiable individual and family level baseline predictors of glycemic control group membership.

Methods: This multisite, prospective study included 239 children and adolescents (ages 9-11 years at baseline) diagnosed with Type 1 diabetes and their caregivers.

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.

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.

Patterns of self-management in pediatric type 1 diabetes predict level of glycemic control 2 years later.

Objective: To determine if 3 distinct self-management patterns (i.e., maladaptive, moderate/mixed, and adaptive) observed at baseline, 1 year, and 2 years in a sample of youth with type 1 diabetes and their caregivers predicted mean differences in adolescent's subsequent glycemic control.

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 < .

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.

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.

Mother-father informant discrepancies regarding diabetes management: associations with diabetes-specific family conflict and glycemic control.

Objective: To examine the relationship of mother-father informant discrepancies regarding diabetes management to diabetes-specific family conflict and glycemic control.

Methods: One hundred thirty-six mothers and fathers of youth with Type 1 diabetes reported on the youth's diabetes management, diabetes-specific family conflict, and amount of paternal involvement in diabetes care. Glycosylated hemoglobin A1c (HbA1c) was used to measure glycemic control.

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.