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.

Executive and adaptive function impacts long-term outcomes for adults with maple syrup urine disease.

Successful transition to independent adulthood requires intact executive and adaptive function. These neurocognitive domains are frequently impaired in inherited metabolic disorders (IMD), despite optimal management. For many IMDs, the impact of executive and adaptive dysfunction on long-term outcomes remains undefined.

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.

Childhood physical activity and pubertal timing: findings from the LEGACY girls study.

Background: There is limited research on whether physical activity (PA) in early childhood is associated with the timing of pubertal events in girls.

Methods: We used data collected over 2011-16 from the LEGACY Girls Study (n = 984; primarily aged 6-13 years at study enrolment), a multicentre North American cohort enriched for girls with a breast cancer family history (BCFH), to evaluate if PA is associated with age at thelarche, pubarche and menarche. Maternal-reported questionnaire data measured puberty outcomes, PA in early childhood (ages 3-5 years) and total metabolic equivalents of organized PA in middle childhood (ages 7-9 years).

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.

Development and validation of a measure of adolescent and young adult goal-based quality of life (MAYA-GQOL).

Purpose: We developed and validated a measure assessing quality of life (QOL) through importance, attainability, and discrepancy of life goals among adolescents and young adults (AYA) with and without cancer. A specific goal-based QOL measure for AYA fills a critical gap in knowledge for AYA who are at a unique life stage, which may include shifts in priorities and goals.

Methods: Through review of our existing AYA databases on goals, the literature, and cognitive interviews we developed the MAYA-GQOL.

Psychosocial impact of COVID-19 on caregivers and adolescents and young adult survivors of childhood cancer.

Background: Caregivers and adolescents and young adult (AYA) cancer survivors may be at greater psychosocial risk from the COVID-19 pandemic than healthy peers due to complex and traumatic medical histories. This study describes COVID-19-related event exposures, impact, and distress among a large sample of caregivers and AYA cancer survivors and the relationship of these variables to demographic and cancer characteristics.

Procedure: From May 2020 to December 2021, 422 caregivers and 531 AYA survivors completed the COVID-19 Exposures and Family Impact Survey (CEFIS) and CEFIS-AYA, respectively.

Mother and Daughter Perspectives on Genetic Counseling and Testing of Adolescents for Hereditary Breast Cancer Risk.

Objective: To evaluate the risks, benefits, and utility of testing for adult-onset hereditary breast and ovarian cancer (HBOC) in adolescents and young adults.

Study Design: We evaluated interest in genetic testing of adolescents for adult-onset HBOC genes through semistructured interviews with mothers and adolescents who had previously participated in breast cancer research or had pursued (mothers) clinical testing for HBOC.

Results: The majority of mothers (73%) and daughters (75%) were interested in the daughter having genetic testing and were motivated by the future medical utility and current social utility of relieving anxiety and allowing them to prepare.

Trajectories of Pain Severity and Interference Among Adolescent and Young Adults With Cancer: A Microlongitudinal Study.

Objective: Cancer-related pain is a pervasive concern among adolescent and young adults (AYA) with cancer and is an emerging long-term health concern. Few studies have examined the complex contributions to pain among AYA. We aimed to fill a gap by (1) identifying subgroups of AYA with distinct patterns of pain severity and interference over time and (2) explore possible predictors of these patterns.

Maternal and prenatal factors and age at thelarche in the LEGACY Girls Study cohort: implications for breast cancer risk.

Background: Earlier onset of breast development (thelarche) is associated with increased breast cancer risk. Identifying modifiable factors associated with earlier thelarche may provide an opportunity for breast cancer risk reduction starting early in life, which could especially benefit girls with a greater absolute risk of breast cancer due to family history.

Methods: We assessed associations of maternal pre-pregnancy body mass index (BMI), physical activity during pregnancy, gestational weight gain and daughters' weight and length at birth with age at thelarche using longitudinal Weibull models in 1031 girls in the Lessons in Epidemiology and Genetics of Adult Cancer from Youth (LEGACY) Girls Study-a prospective cohort of girls, half of whom have a breast cancer family history (BCFH).

Acceptability of Telehealth for Gender-Affirming Care in Transgender and Gender Diverse Youth and Their Caregivers.

Gender-affirming care (GAC) is critical to the well-being of transgender and gender diverse youth and was limited by COVID-19 stay-at-home orders. Telehealth created opportunities for youth to continue receiving lifesaving care. We examined the attitudes of patients (=21) and caregivers (=38) receiving telehealth-delivered GAC (TGAC) from May to July 2020.

The current state of adult metabolic medicine in the United States: Results of a nationwide survey.

Purpose: Patients with inherited metabolic disorders (IMDs) now have improved health outcomes and increased survival into adulthood. There is scant evidence on managing adults with IMDs. We present an analysis of current care practices for adults with IMDs in the United States.

Sociodemographics, Health Competence, and Transition Readiness Among Adolescent/Young Adult Cancer Survivors.

Objective: Fewer than one-third of childhood cancer survivors receive follow-up from an adult provider, and adolescent and young adults (AYAs) from structurally minoritized sociodemographic groups often face health disparities that can impact transition to adult-oriented care. The primary aim of this study was to determine the relation among sociodemographic factors, cumulative effects, and transition beliefs/expectations and goals, and the moderating role of health competence beliefs in AYA survivors of childhood cancer.

Methods: A total of 195 AYAs (aged 15-29) reported sociodemographic information, completed the Transition Readiness Inventory assessing positive beliefs/expectations and goals related to transition, and completed the Health Competence Beliefs Inventory assessing health perceptions, healthcare satisfaction, cognitive competence, and autonomy.

COVID-19 Exposure and Family Impact Scales for Adolescents and Young Adults.

Objective: To understand the impact of the coronavirus disease 2019 (COVID-19) pandemic on adolescents and young adults (AYAs), we adapted the COVID-19 Exposure and Family Impact Scales (CEFIS; Kazak et al., 2021) for AYAs. Here, we report on the development, structure, and psychometric properties of the CEFIS-AYA.

Body mass index rebound and pubertal timing in girls with and without a family history of breast cancer: the LEGACY girls study.

Background: Heavier body mass index (BMI) is the most established predictor of earlier age at puberty. However, it is unknown whether the timing of the childhood switch to heavier BMI (age at BMI rebound) also matters for puberty.

Methods: In the LEGACY Girls Study (n = 1040), a longitudinal cohort enriched with girls with a family history of breast cancer, we collected paediatric growth chart data from 852 girls and assessed pubertal development every 6 months.

Association Between Children With Life-Threatening Conditions and Their Parents' and Siblings' Mental and Physical Health.

Importance: Despite concerns regarding the potential deleterious physical and mental health outcomes among family members of a child with a life-threatening condition (LTC), few studies have examined empirical measures of health outcomes among these family members.

Objectives: To examine whether mothers, fathers, sisters, and brothers of children with 1 of 4 types of pediatric LTCs have higher rates of health care encounters, diagnoses, and prescriptions compared with families of children without these conditions.

Design, Setting, And Participants: This retrospective cohort study included US families with commercial insurance coverage from a single carrier.

Acceptability, Feasibility, and Quality of Telehealth for Adolescent Health Care Delivery During the COVID-19 Pandemic: Cross-sectional Study of Patient and Family Experiences.

Background: Data regarding the acceptability, feasibility, and quality of telehealth among adolescents and young adults (AYA) and their parents and caregivers (caregivers) are lacking.

Objective: The aim of this study was to assess the noninferiority of telehealth versus in-person visits by comparing acceptability with respect to efficiency, effectiveness, equity, patient-centeredness, and confidentiality.

Methods: Cross-sectional web-based surveys were sent to caregivers and AYA following video visits within an Adolescent Medicine subspecialty clinic in May-July 2020.

Understanding Adolescent and Young Adult 6-Mercaptopurine Adherence and mHealth Engagement During Cancer Treatment: Protocol for Ecological Momentary Assessment.

Background: Adolescents and young adults (AYAs) with cancer demonstrate suboptimal oral chemotherapy adherence, increasing their risk of cancer relapse. It is unclear how everyday time-varying contextual factors (eg, mood) affect their adherence, stalling the development of personalized mobile health (mHealth) interventions. Poor engagement is also a challenge across mHealth trials; an effective adherence intervention must be engaging to promote uptake.

Cancer-Related Decision-Making Among Adolescents, Young Adults, Caregivers, and Oncology Providers.

Decision-making among adolescents and young adults with cancer (AYA) is often complex, ongoing, and multifaceted, involving caregiver and oncology provider perspectives. Engagement in decision-making against the backdrop of normative developmental processes of acquiring autonomy and gaining independence contributes to the complexity of decision-making. Semi-structured qualitative interviews from 11 AYA and caregiver dyads and eight oncology providers examined decision-making processes with specific attention to the role of shared decision-making, cognitive and emotional processes, and coping with the decision-making experience.

Electronic symptom monitoring in pediatric patients hospitalized for chemotherapy.

Background: Using patient-reported outcomes for symptom monitoring in oncology has resulted in significant benefits for adult patients with cancer. The feasibility of this approach has not been established in the routine care of children with cancer.

Methods: The Pediatric Patient-Reported Outcomes version of the Common Terminology Criteria for Adverse Events (Ped-PRO-CTCAE) is an item library that enables children and caregivers to self-report symptoms.

Psychometric evaluation of the brief RCOPE and relationships with psychological functioning among caregivers of children undergoing hematopoietic stem cell transplant.

Objective: Spiritual and religious (S/R) coping is a relevant yet understudied domain of coping among caregivers of children undergoing hematopoietic stem cell transplantation (HCT). The aims of this manuscript are to: (1) conduct the first psychometric evaluation of the Brief RCOPE in this population; (2) examine levels of and changes in S/R coping over time; and (3) explore the relationship between S/R coping trajectories and psychological functioning post-HCT.

Methods: Caregivers (n = 170) of children (ages ≤12 years, n = 170) undergoing HCT completed the Brief RCOPE and the Brief Symptom Inventory (BSI) pre- and at multiple time points post-HCT discharge.

Contextual Predictors of Engagement in a Tailored mHealth Intervention for Adolescent and Young Adult Cancer Survivors.

Background: Despite the promise of mobile health (mHealth), engagement is often too low for durable health behavior change, and little is known regarding why certain individuals abandon mHealth tools.

Purpose: Guided by a mHealth engagement framework, we evaluated contextual predictors of objective engagement with an app for adolescents and young adults (AYA) who survived cancer.

Methods: One hundred and ten AYA survivors (M age = 20.

Acceptability and feasibility of survivorship care plans and an accompanying mobile health intervention for adolescent and young adult survivors of childhood cancer.

Background: Self-management interventions for adolescent and young adult (AYA) survivors of childhood cancer are needed. The present study reports on the acceptability and feasibility of delivering survivorship care plans (SCPs) and an accompanying app to AYA.

Procedure: AYA (n = 224) ages 15-29 who completed treatment for cancer were randomized and received a digital SCP only or an SCP plus a mobile app intended to enhance self-management.

Association of Demographic and Cancer-Specific Factors on Health Behavior Recommendations Specific to Cancer Prevention and Control Among Adolescent and Young Adult Survivors of Childhood Cancer.

Adolescent and young adult survivors of childhood cancer (AYA) are at risk for long-term health problems that are exacerbated by not meeting health behavior recommendations (e.g., exercise).