Feasibility and Acceptability of a REDCap-Embedded HIPAA-Compliant Text Messaging Application to Track Medication Adherence in Adolescents With Lupus.

Background/objective: Despite advances in clinical care and treatment options, adolescents with lupus continue to experience adverse health outcomes. Poor adherence to medication regimens is a major contributor to these negative outcomes. The utility of short message service (SMS) in tracking barriers to adherence prospectively remains untested for adolescents with lupus.

Designing Patient-Reported Measures of Fertility: Cognitive Interview Findings from Adolescents and Young Adults with Cancer.

Fertility concerns (FC) are central to the well-being of many adolescent and young adult (AYA) cancer survivors. Clinical conversations about FC and fertility preservation are suboptimal, increasing patient distress. The goal of this project was to establish content validity and comprehensibility of self-report questions on FCs for AYAs with cancer.

Systematic review of family and pediatric constipation: An overlooked piece of the puzzle.

The objective of this review is to summarize pertinent literature looking at family dynamics and/or adherence to treatment in pediatric functional constipation. A structured systematic literature search was conducted on MEDLINE, Embase, and Web of Science core collection libraries from the years 2000 to 2023 using specific search terms: constipation, treatment adherence, family dynamics, parenting style, and pediatrics. Seventy-one publications were identified and included for review.

Fertility Preservation Decisional Turning Points for Adolescents and Young Adults With Cancer: Exploring Alignment and Divergence by Race and Ethnicity.

Purpose: For adolescents and young adults (AYAs) with cancer, fertility preservation (FP) decision making is complex and distressing. Racial/ethnic minority (REM) AYAs experience disparities in FP awareness, uptake, and outcomes. A turning point (TP) is a point of reflection, change, or decisive moment(s) resulting in changes in perspectives or trajectories.

Association Between Patient-Reported Outcomes and Treatment Failure in Juvenile Idiopathic Arthritis.

Objective: Children with juvenile idiopathic arthritis (JIA) frequently exhibit symptoms months before diagnosis. The aims of this study were to assess whether baseline patient-reported outcomes (PROs) are associated with changes in JIA pharmacotherapy treatment and whether symptom duration prior to JIA diagnosis is associated with disease activity scores over time.

Methods: This is a retrospective cohort study of patients with an incident diagnosis of JIA.

Factors Associated With Participation in Clinical Trials Among Patients With Lupus.

Background/objective: Participation rates for clinical trials, including lupus trials, in the United States are low, but are even lower for underrepresented minorities. The impact of underrepresentation in trials can be far-reaching and is problematic because female subjects of color with lupus experience greater morbidity and mortality. As such, the overarching goal of this study was to characterize the factors that influence participation in lupus clinical trials.

A conceptual model of fertility concerns among adolescents and young adults with cancer.

Objective: For adolescents and young adults (AYAs), cancer-related fertility concerns (FC) are salient, disruptive, and complex. Clinical communication about FC and fertility preservation options are suboptimal, increasing patient distress. The purpose of this study is to construct a conceptual model of FC among AYAs with cancer to inform future measurement development.

Weight status and health behaviors of adolescents and young adults with sickle cell disease: The emerging risk for obesity.

Historically, youth with sickle cell disease (SCD) were at risk for being underweight, but recent data suggests this population is replicating obesity trends of youth in the United States. The current observational study assessed the weight status and health behaviors of 44 adolescents and young adults with SCD via a self-report survey and chart review. Using height and weight data closest to survey completion date, 27% of participants were either overweight or obese.

Family Dynamics and Pediatric Weight Management: Putting the Family into Family-Based Treatment.

Purpose Of Review: The treatment of pediatric obesity entails working with entire families. However, aside from parenting and family health behaviors, family dynamics and relationships are not often incorporated in clinical treatment of obesity.

Recent Findings: Evidence across several studies suggest a relationship between family dynamics and child weight, with impaired family dynamics associated with higher weight status in children.

Feasibility and acceptability of an innovative adherence intervention for young adults with childhood-onset systemic Lupus Erythematosus.

Background: In Childhood-Onset Systemic Lupus Erythematosus (cSLE), poor medication adherence rates are very high. Interventions targeting this problem in cSLE are limited thus effective interventions are needed. The objective of this study is to examine the feasibility and acceptability an intervention (automated digital reminders + personalized prescribed treatment plan (pPTP)) to improve medication adherence in young adults with cSLE over 3 months.