Development of the iManage SCD mobile health application for transition.

Objective: This paper outlines the design and implementation of iManage SCD, a self-management mobile health application for adolescents and young adults (AYA) with sickle cell disease (SCD) during transition from pediatric to adult health care.

Methods: The Integrate, Design, Assess, Share (IDEAS) framework, emphasizing user insights, iterative design, rigorous assessment, and knowledge sharing, guided the development process. The design team consisted of researchers, psychologists, physicians, social workers, AYA with SCD, and parents of AYA with SCD (n = 16) across three states.

Assessing Psychosocial Risk and Resilience to Support Readiness for Gene Therapy in Sickle Cell Disease: A Consensus Statement.

Importance: The introduction of gene therapies into the clinical care landscape for individuals living with sickle cell disease (SCD) represents a momentous achievement with the potential to rewrite the story of the world's most prevalent heritable blood disorder. This disease, which was first described in 1910 and did not see a US Food and Drug Administration-approved therapeutic until 1998, is poised to be among the first to realize the promise of gene therapy and genome editing. However, the future of these treatments now rests on how evidence of safety, outcomes, and acceptance in clinical practice unfolds in SCD.

Disparities in adolescent controller medication adherence, treatment barriers, and asthma control.

Background: Disparities in asthma persist despite advances in interventions. Adherence and self-management behaviors are critical yet challenging during adolescence. Treatment barriers include individual factors as well as structural and social determinants of health.

The pervasive influence of systems of power on transition readiness for adult care in sickle cell disease: A qualitative study.

Background: Adolescence and young adulthood are vulnerable developmental periods for individuals with sickle cell disease (SCD), particularly given the impact of social inequities, challenges with transitioning to adult healthcare services, and increased risk for morbidity and mortality. Systems of power, such as institutionalized and interpersonal manifestations of bias, could impact SCD transfer and engagement in adult care through their influence on healthcare transition readiness; yet research in this area is limited.

Objective: To characterize how systems of power impact transition readiness factors described in the Social-ecological Model of AYA Readiness for Transition to Promote Health Equity (SMART-E) framework at the patient, caregiver, and practitioner levels.

Feasibility of a clinic-based, multicomponent hydroxyurea adherence intervention for adolescents and young adults with sickle cell disease.

Despite the effectiveness of hydroxyurea, adherence remains low for adolescents and young adults (AYA) living with sickle cell disease (SCD). This study evaluated the feasibility, acceptability, and initial efficacy of a clinic-based, multicomponent (e.g.

Disease-modifying therapies for sickle cell disease: Decisional needs and supports among adolescents and young adults.

Background: Shared decision-making is one promising solution to addressing barriers in use of disease-modifying therapies for adolescents and young adults (AYAs) with sickle cell disease (SCD). A thorough understanding of decisional needs can guide the development of decisional supports and promote shared decision-making.

Procedure: Informed by the Ottawa Decision Support Framework (ODSF), we conducted a qualitative analysis to assess decisional needs and supports reported by AYAs with SCD, their caregivers, and healthcare providers.

Trajectory of Sleep, Depression, and Quality of Life in Pediatric HSCT Recipients.

Disrupted sleep is commonly reported during hematopoietic stem cell transplant. In this study, we use actigraphy to measure sleep parameters, and qualitative measures of quality of life, depression, and sleep in pediatric and young adult transplant recipients to describe their time course through transplant. Eight patients had evaluable actigraphy data, and 10 patients completed the surveys.

Factors Associated With Racially and Ethnically Diverse Sample of Adolescents, Young Adults, and Parents' Intention to Receive a COVID-19 Vaccine.

Purpose: Identify variables, including moderating variables, associated with adolescents, young adults, and parents' intention to receive a COVID-19 vaccine in January 2021.

Design: Cross-sectional survey.

Setting: United States Midwestern academic medical center.

An Updated Equitable Model of Readiness for Transition to Adult Care: Content Validation in Young People With Sickle Cell Disease.

Importance: Despite elevated health risks during young adulthood, many adolescents and young adults with serious health care needs face barriers during the transfer to an adult specialty practitioner, and health disparities may occur during the transition.

Objective: To validate the content of an updated Social-Ecological Model of Adolescent and Young Adult Readiness for Transition to Promote Health Equity (SMART-E) in a group of adolescents and young adults with sickle cell disease (SCD) and their supports.

Design, Setting, And Participants: Health equity framework components were reviewed.

Feasibility of Electronic Medication Monitoring Among Adolescents and Emerging Adults with Sickle Cell Disease.

Purpose: To examine the feasibility of using MEMS bottles to assess adherence among adolescents and emerging adults with sickle cell disease.

Patients And Methods: Eighteen non-Hispanic Black participants with HbSS (M = 17.8 years; 61% male) were given a MEMS bottle to store hydroxyurea (n = 14) or deferasirox (n = 4).

A feasibility randomized controlled trial of an mHealth app vs booklets for patient-facing guidelines in adults with SCD.

Despite the increased number of evidence-based guidelines for sickle cell disease (SCD), dissemination of evidence-based guidelines in lay language for individuals or families with SCD has not been evaluated. We conducted a feasibility randomized controlled trial to determine the acceptability of a mobile health (mHealth) app with patient-facing guidelines to improve the knowledge of individuals with SCD about SCD-specific knowledge and reduce hospitalizations. Primary outcome measures include recruitment, retention, and adherence rates.

The Effect of an Adapted Digital Mental Health Intervention for Sickle Cell Disease on Engagement: A Pilot Randomized Controlled Trial.

Introduction: Despite promising outcomes, lack of engagement and poor adherence are barriers to treating mental health using digital CBT, particularly in minority groups. After conducting guided focus groups, a current mental health app was adapted to be more inclusive for minorities living with SCD.

Methods: Patients between the ages of 16-35 with SCD who reported experiencing anxiety or depression symptoms were eligible for this study.

Partnering with Families and Communities to Improve Child Health and Health Equity.

Pediatricians and other pediatric health providers collaborate with families and communities, including schools, health departments, and other partners to advance pediatric health challenges and health equity. This article will discuss best practices and guiding principles to support engagement and effective partnership with families and communities. Models for engaging families and communities while promoting health equity will also be discussed.

School Challenges and Services Related to Executive Functioning for Fully Included Middle Schoolers with Autism.

The educational services available for fully included middle schoolers with autism spectrum disorder (ASD) in the general education setting are not well known. Even less is known about how the executive functioning (EF) deficits of such youth are addressed in the classroom. The current study sought to identify the challenges, including EF, that middle schoolers with ASD face and the services that they receive on their Individualized Education Program (IEP), and also explore specific strategies used to build EF skills at school.

Evaluation of a Community COVID-19 Vaccine Ambassador Train-the-Trainer Program.

Racially minoritized groups are more likely to experience COVID-19 vaccine hesitancy and have lower vaccination rates.  As part of a multi-phase community-engaged project, we developed a train-the-trainer program in response to a needs assessment. "Community vaccine ambassadors" were trained to address COVID-19 vaccine hesitancy.

Virtual reality informs clinical observation tool.

Background: Assessing trainees' skills via workplace-based assessments is challenging given the lack of psychometrically valid instruments. Our team previously developed an observation instrument to assess residents' competencies in behavioral health anticipatory guidance (BHAG) and motivational interviewing (MI) though its reliable usage required expert raters (e.g.

Psychologists as leaders in equitable science: Applications of antiracism and community participatory strategies in a pediatric behavioral medicine clinical trial.

Psychologists have an ethical responsibility to advance health equity and can play a significant role in improving health care experiences for families racialized as Black, including those with sickle cell disease (SCD), a group of genetic blood disorders primarily affecting communities of color. Parents of children with SCD report experiences of stigma and discrimination due to racism in the health care system. The current commentary describes the application of antiracism and participatory strategies to the research design, implementation, and dissemination of a behavioral medicine clinical trial (Engage-HU; NCT03442114) of shared decision-making (SDM) for pediatric patients with SCD, including (a) the development of a research question to promote justice for racialized groups; (b) a focus on "redressing imbalances" through SDM and a multidisciplinary, inclusive research team led by a Black psychologist; (c) community participatory approaches through the integration of stakeholder feedback across the study; and (d) centering context by attending to structural realities in response to the COVID-19 and racism pandemics.

Understanding Barriers and Facilitators of Attention-Deficit/Hyperactivity Disorder Treatment Initiation and Adherence in Black and Latinx Children.

Objective: Despite evidence that consistent treatment is important for Attention-Deficit/Hyperactivity Disorder (ADHD) management, ADHD treatment initiation and adherence remains suboptimal in minoritized children. The goal of this study was to explore barriers and facilitators to ADHD treatment initiation/adherence for minoritized children to further inform development of our family navigation intervention.

Methods: Using a virtual platform, we completed 7 focus group sessions (total n.

Overcoming Vaccine Hesitancy Using Community-Based Efforts.

Vaccine acceptance by parents and caregivers remains a public health challenge that can potentially be addressed via community-based strategies. Such strategies might augment current vaccine hesitancy interventions occurring within medical homes. This article reviews the key challenges and advantages of evidence-based community strategies for overcoming parent/caregiver vaccine hesitancy, specifically (1) community-participatory vaccine hesitancy measurement, (2) communication approaches, (3) reinforcement techniques (eg, incentives, mandates), and (4) community-engaged partnerships (eg, vaccine champion training, vaccination in community settings).