Hydroxyurea to prevent brain injury in children with sickle cell disease (HU Prevent)-A randomized, placebo-controlled phase II feasibility/pilot study.

Central nervous system (CNS) injury is common in sickle cell disease (SCD) and occurs early in life. Hydroxyurea is safe and efficacious for treatment of SCD, but high-quality evidence from randomized trials to estimate its neuroprotective effect is scant. HU Prevent was a randomized (1:1), double-blind, phase II feasibility/pilot trial of dose-escalated hydroxyurea vs.

Cross-Cutting mHealth Behavior Change Techniques to Support Treatment Adherence and Self-Management of Complex Medical Conditions: Systematic Review.

Background: Mobile health (mHealth) interventions have immense potential to support disease self-management for people with complex medical conditions following treatment regimens that involve taking medicine and other self-management activities. However, there is no consensus on what discrete behavior change techniques (BCTs) should be used in an effective adherence and self-management-promoting mHealth solution for any chronic illness. Reviewing the extant literature to identify effective, cross-cutting BCTs in mHealth interventions for adherence and self-management promotion could help accelerate the development, evaluation, and dissemination of behavior change interventions with potential generalizability across complex medical conditions.

"It's On Me": Perspectives of College Students Without Complex Medical Needs Learning to Manage Their Healthcare.

Objective: Most of the transition literature examines adolescents and young adults with special healthcare needs, though many youth will eventually transition to adult healthcare providers, regardless of medical complexity. This study addresses this gap by examining transition needs and experiences specifically within a college student sample of emerging adults without complex medical needs.

Methods: 108 college students (age=20.

Medication adherence in youths with CKD: habits for success.

Background: Poor adherence habits are key contributors to nonadherence but there are few clinically feasible methods for evaluating adherence habits, particularly for youths with chronic kidney disease (CKD). This study investigated how participants' qualitative responses to three interview questions about adherence habits mapped to primary principles of habit formation and objectively measured medication adherence in youths with CKD.

Methods: Participants (ages 11-21 years) were recruited from a pediatric nephrology clinic as part of a larger study.

Utilization of a primary care-based cancer survivorship clinic: patterns and patient characteristics.

Purpose: The Johns Hopkins Primary Care for Cancer Survivors (PCCS) Clinic was established in 2015 to improve care delivery for the growing cancer survivor population. We aim to describe areas of care addressed by PCCS and factors associated with clinic utilization.

Methods: We conducted a retrospective chart review of the first 301 patients' clinic visits.

Agreement between attended home and ambulatory blood pressure measurements in adolescents with chronic kidney disease.

Background: This study aimed to compare attended home blood pressure (BP) measurements (HBPM) with ambulatory BP monitor (ABPM) readings and examine if level of agreement between measurement modalities differs overall and by subgroup.

Methods: This was a secondary analysis of data from a 2-year, multicenter observational study of children 11-19 years (mean 15, SD = 2.7) with chronic kidney disease.

Caregiver-reported outcomes of pediatric transplantation: Changes and predictors at 6 months post-transplant.

Background: It is widely assumed that pediatric solid organ transplantation results in better caregiver-reported outcomes, including reduced caregiver psychological distress and increased child health-related quality of life (HRQOL), yet little empirical evidence of this expectation exists. The current investigation aims to fill this gap and identify key clinical course factors predictive of caregiver-reported outcomes.

Methods: Forty-nine caregivers of children (M  = 10.

The role of executive functioning, healthcare management, and self-efficacy in college students' health-related quality of life.

Examine how executive functioning (EF), healthcare management, and self-efficacy relate to college students' health-related quality of life (HRQOL). : Undergraduates completed questionnaires at baseline (Time 1;  = 387) and 18-24 months later (Time 2;  = 102). Participants reported on their EF and healthcare management skills at Time 1 and self-efficacy and mental and physical HRQOL at Time 2.

Engagement and Affective Communication During Pediatric Nephrology Clinic Visits: Associations with Medication Adherence.

Objective: To evaluate whether engagement and affective communication among adolescents and young adults (AYAs) with chronic kidney disease (CKD), caregivers, and pediatric nephrology providers during outpatient clinic visits predicts antihypertensive medication adherence.

Methods: AYAs (n = 60, M age = 15.4 years, SD = 2.

The role of executive functioning in health self-management and the transition to adult health care among college students.

To examine the role of executive functioning (EF) in health self-management and the transition to adult health care among college students. A total of 378 undergraduate students from a public university participated in the study. Participants reported on EF, health self-management skills, and their readiness to transition to adult care.

Caregivers' Barriers to Facilitating Medication Adherence in Adolescents/Young Adults With Solid Organ Transplants: Measure Development and Validation.

Objective: To evaluate the factor structure, validity, and reliability of the Caregiver Medication Barriers to Adherence Scale (CMBAS), which assesses caregivers' barriers to facilitating medication adherence in adolescent and young adults (AYAs) with solid organ transplants.

Methods: The sample included 93 caregivers of AYAs ages 12-22 years who received a liver, kidney, or heart transplant. Caregivers completed the CMBAS and surveys to assess its validity, including internalizing symptoms, personality traits (i.

Adherence Barriers for Adolescent and Young Adult Transplant Recipients: Relations to Personality.

Objective: Much of the extant literature on adherence barriers has focused on modifiable factors (e.g., knowledge, social support); however, less is known about how barriers may be associated with relatively stable constructs, such as personality traits.

Executive functioning, caregiver monitoring, and medication adherence over time in adolescents with chronic kidney disease.

Objective: The purpose of this study was to evaluate associations between executive functioning and caregiver adherence monitoring with objective antihypertensive medication adherence over 24 months in adolescents with chronic kidney disease (CKD).

Methods: Adolescents ( = 97, 11-20 years old) with CKD taking antihypertensive medication and their caregivers were recruited from three pediatric nephrology clinics. At baseline, adolescents and caregivers reported on adolescents' executive functioning and caregivers reported on their adherence monitoring.

Misunderstandings, misperceptions, and missed opportunities: Perspectives on adherence barriers from people with CF, caregivers, and CF team members.

Objective: To identify differences in perspectives of people with cystic fibrosis (PwCF) and caregivers versus healthcare providers on adherence barriers. Mismatched perspectives may lead to miscommunication and missed opportunities to reduce barriers and improve CF outcomes.

Methods: PwCF, caregivers, and CF providers completed audio-taped, semi-structured interviews about adherence barriers.

Looking beyond the individual: How family demands and capabilities affect family adjustment following pediatric solid organ transplant.

Introduction: Better family adjustment following pediatric solid organ transplantation has been associated with a number of beneficial medical and psychosocial outcomes. Yet few studies have examined which pretransplant variables are associated with posttransplant family adjustment. This information can aid in identifying families that may need support going into the transplantation process and those who are at lower risk of worse posttransplant adjustment.

Sleep quality is associated with psychosocial functioning and health-related quality of life in pediatric transplant recipients.

This study examined patient-reported sleep quality in a single-center cross-sectional sample of adolescents with solid organ transplants and evaluated associations between sleep quality, psychosocial functioning (ie, depression/anxiety symptoms), and HRQOL. Health disparities associated with minority race/ethnicity and socioeconomic variables were also examined. Sixty-nine adolescents (M = 16.

A preliminary investigation of sleep quality and patient-reported outcomes in pediatric solid organ transplant candidates.

The current cross-sectional, single-center study aimed to examine sleep quality in a sample of adolescents awaiting solid organ transplantation and to explore associations between sleep quality and both health-related quality of life and barriers to adherence. Thirty adolescents between the ages of 12 and 18 years (M age = 15.26, SD = 1.

Patient Health Beliefs and Characteristics Predict Longitudinal Antihypertensive Medication Adherence in Adolescents With CKD.

Objective: To investigate longitudinal associations of health beliefs, which included self-efficacy, outcome expectancies, and perceived barriers, and demographic risk factors (i.e., age, gender, race, and family income) with antihypertensive medication adherence in adolescents with chronic kidney disease (CKD) over 24 months.

Does a multimethod approach improve identification of medication nonadherence in adolescents with chronic kidney disease?

Background: Medical provider assessment of nonadherence is known to be inaccurate. Researchers have suggested using a multimethod assessment approach; however, no study has demonstrated how to integrate different measures to improve accuracy. This study aimed to determine if using additional measures improves the accurate identification of nonadherence beyond provider assessment alone.

Multimethod Assessment of Medication Nonadherence and Barriers in Adolescents and Young Adults With Solid Organ Transplants.

Objective: To (a) examine levels of medication nonadherence in adolescent and young adult (AYA) solid organ transplant recipients based on AYA- and caregiver proxy-reported nonadherence to different medication types and the medication-level variability index (MLVI) for tacrolimus, and (b) examine associations of adherence barriers and AYA and caregiver emotional distress symptoms with reported nonadherence and the MLVI.

Method: The sample included 47 AYAs (M age = 16.67 years, SD = 1.

Relations between Positive Temperament, Substance Use, and Internalizing Problems among Adolescents and Young Adults with and without Medical Conditions.

Background: Substance use problems are prevalent during emerging adulthood and may be particularly harmful for individuals with medical conditions. Understanding the role of positive temperament in substance use for adolescents and young adults (AYAs) may facilitate the identification of intervention and prevention targets given the complex relations between positive emotions and substance use.

Objective: To examine whether components of positive temperament differentially relate to substance use in a sample of AYAs with and without medical conditions.

Different Demands, Same Goal: Promoting Transition Readiness in Adolescents and Young Adults With and Without Medical Conditions.

Purpose: This study aimed to examine differences in transition readiness, self-involvement and parental involvement in completing medical tasks, and general self-efficacy between a sample of older adolescents and young adults (AYAs) with medical conditions and a sample of healthy peers. Relations among these variables were also examined.

Methods: The sample included 494 AYAs (mean age = 19.

The interactive effect of parent personality and medication knowledge on adherence in children awaiting solid organ transplantation.

Objective: The study aimed to examine parent personality factors as predictors of parent medication knowledge and parent-report of child medication adherence.

Method: Seventy-eight parents (Mage = 37.68, 87.