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.

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. This commentary underscores the relative importance of identifying factors that could reduce disparities between minority and non-minority populations. This present paper will focus on the dynamic relationships between health disparities, psychosocial factors and health outcomes within pediatric cancer, sickle cell disease and bone marrow transplant populations, and will offer recommendations for healthcare professionals working with these vulnerable patient populations. The primary goal of this commentary is to provide recommendations for enhancing cultural competency and humility for those working with highly vulnerable patient populations.

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.

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.

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., electronic monitoring (EM), pharmacological assays) or subjective methods (patient, parent, or physician reports). This paper provides an illustration of recommended strategies for comparing discrepancies between two objective measures of medication adherence (e.g., behavioral adherence using electronic monitoring versus pharmacological adherence using 6-mercaptopurine (6MP) metabolite data) within a relatively large cohort of pediatric patients with ALL or LBL (N = 139) who had longitudinal data for both measures of medication adherence over a 15-month period. Additionally, individual- and family-level factors such as gender, socioeconomic status, household environment, and dose intensity will be examined to identify possible sources of discrepancies between adherence measures. This information will provide practical advice for physicians, healthcare providers, and psychologists in identifying nonadherence and the caveats therein so patients achieve the best possible health outcomes.

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. This manuscript examined ethnic and racial differences in social problem-solving domains (Social Problem-Solving Inventory) among patients aged 7-19 years old who were diagnosed with cancer; and, their caregivers (N = 139). This was a 15-month longitudinal study. We also examined differences in medication adherence based on behavioral adherence measures. Our study found significant differences between minority and non-minority reporters across multiple social problem-solving domains (p < 0.05). However, there were no significant differences observed for medication adherence. Our findings underscore the importance of implementing culturally sensitive interventions in clinical care that could ultimately positively impact health behaviors, interactions with healthcare providers, and long-term health outcomes.

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.

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.

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. The adolescent participants gave high ratings on the acceptability of the text messaging system. Asthma control improved from baseline to month 1 regardless of whether teens were in the texting or control group. While participants were in the texting group, their quality of life improved and worry about their asthma decreased. Receiving the text intervention resulted in an increase in adherence of 2.75% each month relative to no intervention, but the improvements were not sustained. There was modest improvement in asthma control and quality of life outcomes, as well as improved adherence during the texting intervention.

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.

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. Compared with SFD patients, ED patients had longer medical admissions (P < .001), more depressive disorders (P < .01), higher lifetime rates of suicidal ideation and self-injurious behaviors (P < .05), and were more frequently discharged to intensive psychiatric treatment programs (P < .001). SFD patients were referred later to psychiatry (P < .001), had more emergency department visits (P < .001) and more visits to other hospitals (P < .05) and also had higher rates of learning difficulties (P < .001), bullying (P < .05), and trauma (P < .01) compared with ED patients. CONCLUSIONS: Identifying overlapping features and key differences in the clinical characteristics and health care use of patients with primary psychiatric disorders like ED and SFD, who are frequent users of medical services, is the first step toward developing innovative, integrated hospital-based care approaches and clinical pathways that can reduce service utilization and improve patient outcomes.

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.

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.

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. RESULTS: Autonomy support and BGMF significantly decreased over time and responsibility for the diabetes regimen shifted from the caregiver toward youth over time. Significant changes in perceived family conflict over time differed depending on the reporter. Baseline BGMF, changes in caregiver autonomy support, and changes in responsibility for the regimen significantly predicted changes in BGMF over time. CONCLUSIONS: This study documents changes in autonomy support, youth responsibility for the diabetes regimen, and BGMF during the transition into early adolescence. Higher levels of caregiver autonomy support preserve BGMF during a developmental period in which BGMF typically deteriorates.

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. Glycemic control was based on hemoglobin A1c (HbA1c) collected at 6-month intervals over a period of 3 years. Predictors of glycemic control membership included baseline global executive functioning, diabetes self-management, diabetes-specific family conflict, blood glucose monitoring frequency, and relevant individual and family level covariates. RESULTS: Group-based trajectory analyses were used to describe patterns of glycemic control from baseline to 36 months and 3 trajectories were identified: low risk (42.9%), elevated risk (44.6%), and high risk (12.1%) subgroups. Baseline maternal-reported family conflict, blood glucose monitoring frequency, and gender were significant predictors of glycemic control group membership. Higher levels of baseline family conflict, lower frequency of blood glucose monitoring, and female gender were associated with elevated and high-risk group membership. CONCLUSIONS: These findings underscore the importance of examining trajectories of HbA1c across time. These results suggest that problematic trajectories of glycemic control are evident during the transition to adolescence. Furthermore, there are modifiable individual and family level characteristics that predict group membership and hence could be targeted in interventions to ensure adequate glycemic control is maintained over time and that risks for diabetes-related complications are reduced.

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.

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.

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. METHODS: This study is a descriptive, multisite, prospective study that examined a sample of youth diagnosed with type 1 diabetes (ages 9-11 years at baseline). Youth and their maternal and paternal caregivers provided information about the youth's self-management patterns at baseline, 1 year, and 2 years using the Diabetes Self-Management Profile structured interview. Glycemic control (hemoglobin A1c: HbA1c) was examined at baseline and 6, 12, 18, and 24 months. RESULTS: Three distinct self-management patterns were observed at 1 year and 2 years, which were conceptually consistent with previously reported baseline self-management patterns. Youth identified by their maternal caregivers as having adaptive self-management patterns at baseline had better glycemic control across 2 years compared with those in the maladaptive and mixed self-management groups. Similarly, maternal reports suggested that youth with less adaptive self-management patterns generally had worse glycemic control over time and HbA1c values above the American Diabetes Association recommendations. Youth and paternal caregiver reports yielded more variable findings. CONCLUSIONS: Findings underscore the stability of self-management patterns in pediatric type 1 diabetes and the need for preventive interventions that are tailored to specific patterns of self-management associated with risk for problematic glycemic control.