Pediatric Research and Health Care for Transgender and Gender Diverse Adolescents and Young Adults: Improving (Biopsychosocial) Health Outcomes

Adolescent and young adult (AYA) transgender health care and research have expanded rapidly in the United States and abroad, but the effects of gender-affirming social, hormonal, or surgical care on overall health remain unclear. Gender diverse identities, also termed nonbinary, have often been neglected in favor of (male/female) binary identities, even in the context of transgender health care and research. No high quality studies have assessed how gender-affirming medical care impact health inequities in transgender and gender diverse (TG/GD) adults, much less in AYAs, despite the fact that that TG/GD adults have higher than average morbidity and mortality across a host of health concerns, from human immunodeficiency virus infection to thromboembolism, and that reported depression with suicidal ideation is >10 times higher in TG/GD adults than in the general population.TG/GD youth have related but different needs from TG/GD adults. TG/GD AYA are embedded in family and schools, where stigma may be difficult to escape; mental health during adolescence has areas of increased risk as well as resilience; and the effects of early hormonal and surgical interventions on long-term health are insufficiently studied. Because of this, an inclusive and proactive approach to addressing the needs of TG/GD AYA by pediatric clinicians, researchers, and educators is particularly crucial.This article focuses on what is known and unknown about clinical practice, research, and education related to TG/GD health. We highlight the role of gender affirmation by clinicians as they care and advocate for TG/GD AYAs; the potential challenges of hormonal treatment for peripubertal youth; and short- and long-term effects on physical and reproductive health of medical or surgical interventions. We also discuss how social context influences knowledge gaps and the health-relevant risks faced by TG/GD AYA. The challenges are formidable, but opportunities await: high priority research questions to explore, educational gaps to be filled, and advocacy that needs the voices of pediatricians to promote policies to facilitate positive health outcomes for TG/GD AYA.     

Psychosocial issues for adolescent and young adult cancer patients in a global context: A forward‐looking approach

The first decade of adolescent and young adult (AYA) oncology psychosocial care and research (2005–2015) was driven by a normative, developmental framework that assumed a generalizable life experience for AYAs that is distinct from both younger children and older adults. As we proceed through a second decade, new considerations emerge regarding diversity of life experiences as occurring within and influenced by a complex global context. The purpose of this paper is to review and provide commentary on the impact of global and contextual conditions on AYAs. We expound upon the effects of precarious labor conditions, changing timetables and priorities for developmental tasks, sexual and gender plurality, and expanding cultural diversity. We discuss the implications of social genomics and technology and social media for enhancing precision psychosocial medicine. To build a forward‐looking approach, this paper calls for tailored, multilevel treatments that consider variability of AYAs within the social and global contexts in which they live.     

Acute lymphoblastic leukemia and lymphoblastic lymphoma in adolescents and young adults

Compared to younger and older age groups, the incidence of acute lymphoblastic leukemia (ALL) and lymphoblastic lymphoma (LBL) has increased more in the adolescent and young adult (AYA) population, the cause of which is unknown. As of the last decade, only half of the AYA patients with these diseases were surviving 10 years. Strong evidence exists that favors “pediatric” treatment regimens for AYAs compared to “adult” treatment regimens in terms of survival rates, hospitalization time, toxicities, late effects, and quality of life both during and after treatment. Targeted agents are clinically accessible for certain subsets of patients with Philadelphia‐like ALL, the incidence of which peaks in AYAs. Treatment teams must appreciate the complex psychosocial underpinnings in these patients in order to maximize compliance with the prolonged and complex treatment plans during the AYA years. 1     

Promoting adherence in adolescents and young adults with cancer to optimize outcomes: A developmentally oriented narrative review

Adherence is a critical consideration in ongoing efforts to improve outcomes among adolescents and young adults (AYAs) with cancer. In this narrative review, we embed existing conceptualizations of adherence within a developmental context to provide a novel vantage point from which to examine this important issue. Applying this developmentally oriented framework, we summarize the most current literature on strategies to enhance adherence in the AYA population. A developmentally informed approach to working with AYAs can elucidate unique strengths and vulnerabilities of this population and offer a new perspective on opportunities to respond to biopsychosocial barriers to adherence in a strengths‐based, collaborative manner.     

Global assessment of cancer incidence and survival in adolescents and young adults

In high‐income countries, cancer remains the commonest cause of disease‐related death in adolescents and young adults (AYAs) despite survival improvements. With more than 1,000,000 new diagnoses of cancer in AYAs annually worldwide, and their number of life‐years affected by cancer being greatest of all ages, the global burden of cancer in AYAs exceeds that in all other ages. In low‐ and middle‐income countries, where the great majority of the world's 3 billion AYAs reside, the needs of those with cancer have been identified and demand attention. Unique to the age group but universal, the psychosocial challenges they face are the utmost across life's spectrum. This lead‐off article of a new series in Pediatric Blood and Cancer on AYA oncology attempts to assess the global status of this emerging discipline. The review includes the changing incidence and survival of the common cancers in AYAs—there is no other age group with a similar array of malignancies—and the specific challenges to quality and quantity of life that compromise their lives.     

Adolescent and young adult Hodgkin lymphoma: Raising the bar through collaborative science and multidisciplinary care

Hodgkin lymphoma (HL) is one of the most common cancers in the adolescent and young adult (AYA) population (15–39 years). Despite continued improvements in HL outcomes, AYAs have not exhibited survival gains to the same extent as other age groups. At present, details about tumor biology, optimal therapeutic approaches, supportive care needs, and long‐term toxicities in AYAs with HL remain understudied. Herein, we summarize the current state of the AYA population with HL, specifically focusing on how collaborations across the pediatric and medical oncology divide, coupled with multidisciplinary patient care, can further optimize outcomes for this group of patients.     

Role of clinical trials in survival progress of American adolescents and young adults with cancer—and lack thereof

In the United States, adolescent and young adult (AYA) patients with cancer have the lowest clinical trial participation rate of all age groups and slower progress in survival improvement than younger patients. Ominously, AYA clinical trial participation has been steadily decreasing since 2010, except in 15–19 year olds and AYAs with acute lymphoblastic leukemia. In order to reverse the accrual trend, multiple changes are necessary, including convincing community oncologists to pursue clinical trials on behalf of their AYA patients and to have the new National Community Oncology Research Program and National Clinical Trials Network lead a coordinated effort to increase accrual.     

Psychosexual functioning in cancer survivorship: What the pediatric oncologist needs to know

Sexual health may be disrupted in adolescents and young adults (AYAs) both during and after cancer treatment, irrespective of whether they are diagnosed in childhood, adolescence, or young adulthood. Unfortunately, oncology providers often underestimate the relevance of psychosexual issues for AYAs and underprioritize sexual health throughout treatment and survivorship. The purpose of this narrative review is to provide information on (a) the etiology of psychosexual dysfunction in childhood, adolescent, and young adult cancer patients and young adult survivors of childhood cancer; (b) strategies for communicating and evaluating potential sexual health issues of AYA patients/survivors; and (c) guidance for the practicing pediatric oncologist on how to address sexual health concerns with patients.     

Transition Navigator Intervention Improves Transition Readiness to Adult Care for Youth With Sickle Cell Disease

ObjectiveAdolescents and young adults (AYA) with sickle cell disease (SCD) experience high rates of acute care utilization and increased morbidity. At this high-risk time, they also face the need to transition from pediatric to adult services, which, if poorly coordinated, adds to heightened morbidity and acute care utilization. The study objective was to characterize the feasibility, acceptability, and short-term efficacy of a protocolized transition navigator (TN) intervention in AYA with SCD.MethodsWe developed a protocolized TN intervention that used ecological assessment and motivational interviewing to assess transition readiness, identify goals, and remove barriers to transition, and to provide disease and pain management education and skills to AYAs with SCD.ResultsNinety-three percent (56/60) of enrolled individuals completed the intervention. Participation in the TN program was associated with significant improvement in mean transition readiness scores (3.58–4.15, P < .0001), disease knowledge scale (8.91–10.13, P < .0001), Adolescent Medication Barriers Scale (40.05–35.39, P = .003) and confidence in both disease (22.5–23.96, P = .048) and pain management (25.07–26.61, P = .003) for youth with SCD.ConclusionThe TN intervention was acceptable to youth with SCD, feasible to implement at an urban academic medical center, and addressed barriers to transition identified by the youth. Longer-term assessment is needed to determine if the TN intervention improved successful transfer to and retention in adult care.     

Future health of AYA survivors

Adolescent and young adult (AYA) oncology patients (ages 15–39) have been identified as a group with healthcare disparities including gaps and challenges in diagnosis, access to care, research, clinical trial participation, and cure rates. Like other patient groups with cancer or other chronic illnesses, disparities can lead to poor future health and outcomes, which is a well‐recognized concern within the AYA population. Cancer is the leading disease‐related cause of death in this age range. Numerous interested groups including the National Cancer Institute have met to address the research and cancer care needs of AYAs. This review highlights how these gaps in care during and after treatment can affect future health of this population of patients. Access to care, models of survivorship care, and lack of provider education are discussed. Survivorship care and use of guidelines, and promotion of psychosocial support and health behaviors during treatment and beyond are essential to optimizing future health of AYA patients.     

Cutaneous melanoma in adolescents and young adults

Cutaneous melanoma is rare in children, but has greater incidence in adolescents and young adults (AYAs). Diagnosis may be challenging due to its rarity in these age groups. Few studies have specifically addressed the topic of AYA melanoma. Though young‐age melanoma may have particular biological characteristics, available data suggest that its clinical history is similar to that of adults. However, advances in treatment of adult melanoma have not been reflected in the treatment of AYAs. There is no standard treatment, and access to clinical trials is difficult for AYAs. Further efforts are needed to overcome these issues by improving cooperation with experts on adult melanoma.     

Adolescents and young adults with cancer: An orphaned population

Adolescents and young adults (AYAs [15 to 29 years of age]) with cancer have a distinct cancer epidemiology, evolving hormonal milieu, maturing development, transitions in autonomy, increasing demands in education, entry into the workplace and family responsibilities. The prevalence of epithelial cancers in AYA patients represents a major shift from the embryonal cancers that predominate in early childhood. Thus, one would expect a specialized expertise to be required in caring for these patients, who typically fall between paediatric and oncology spheres of practice. Complex issues contribute to the lower survival rates noted for AYAs compared with those of younger patients, even with the same cancer. Cooperative group clinical trial participation has been crucial in advancing the excellent outcomes accomplished in paediatric oncology, yet participation by adolescents in clinical trials (either adult or paediatric) is typically low. There is increasing evidence that both appropriate location of care and access to specialists in paediatric or adult oncology contribute to favourable outcomes. Issues specific to AYA patients should be studied rigorously so that evidence-based approaches may be used to reduce waiting times, ensure prompt referral to appropriate centres, increase accrual to clinical trials, foster compliance, provide comprehensive supportive care and promote programs designed to enhance survivorship.     

Barriers to medication adherence in children,adolescents, and young adults prescribed anticoagulation

Pediatric and adolescent and young adult (AYA) thromboembolism is treated with anticoagulation, but little is known about adherence. The aims of this study were to describe barriers to adherence among children and AYAs (ages 0–25 years) prescribed anticoagulants and to explore the relationship between barriers and self-reported adherence. Nearly 75% of patients and caregivers reported barriers, and a larger number of barriers was associated with missing at least one dose in the past month per both patient (r_pb = 0.48, p = .01) and caregiver (r_pb = 0.52, p = .01) report. Limitations, clinical implications, and future directions are discussed.     

NHL in adolescents and young adults: A unique population

Non‐Hodgkin lymphoma (NHL) is a heterogeneous group of lymphoid malignancies with high incidence in adolescents and young adults (AYAs). The most common diseases include diffuse large B‐cell lymphoma, anaplastic large cell lymphoma, Burkitt lymphoma, lymphoblastic lymphoma, and primary mediastinal large B‐cell lymphoma. In comparison to younger children and adults, AYAs (15–39 years) with NHL present a specific set of challenges including variations in tumor biology, inconsistent treatment, pharmacodynamics, and psychosocial barriers. While survival of AYAs with NHL has improved, cure rates remain suboptimal. Incorporation of novel agents into pediatric‐inspired treatment regimens specifically designed for NHL in AYAs has led to improved outcomes. Consideration of AYAs as a distinct population in the diagnosis and treatment of NHL is encouraged.     

What Types of Hospitals Do Adolescents and Young Adults With Complex Chronic Conditions Use?

Background and objectiveHospitalizations for children with complex chronic conditions (CCC) at pediatric hospitals have risen over time. Little is known about what hospital types, pediatric or adult, adolescents, and young adults (AYA) with CCCs use. We assessed the types of hospitals used by AYAs with CCCs.MethodsWe performed a cross-sectional study of 856,120 hospitalizations for AYAs ages 15-to-30 years with ≥1 CCC in the 2017 National Inpatient Sample. We identified AYA with CCC by ICD-10-CM diagnosis codes using the pediatric CCC classification system version 2. Hospital types included pediatric hospitals (n = 70), adult hospitals with pediatric services (n = 277), and adult hospitals without pediatric services (n = 3975). We analyzed age trends by hospital type and CCC count in 1-year intervals and dichotomously (15–20 vs 21–30 years) with the Cochran-Armitage test.ResultsThe largest change in pediatric hospitals used by AYA with CCCs occurred between 15 and 20 years with 39.7% versus 7.7% of discharges respectively (P< 0.001). For older AYA (21 to 30 years), 1.0% of discharges occurred at pediatric hospitals, compared with 65.6% at adult hospitals without pediatric services (P < 0.001). Older AYA at pediatric hospitals had more technology dependence (42.5%) versus younger AYA (27.6%, p < 0.001).ConclusionsMost discharges for AYAs ≥21 years with CCCs were from adult hospitals without pediatric services. Higher prevalence of technology dependence and neuromuscular CCCs, as well as multiple CCCs, for AYA 21-to-30 years discharged from pediatric hospitals may be related to specific care needs only found in pediatric settings and challenges transferring into adult hospital care.     

Evaluating and providing quality health information for adolescents and young adults with cancer

Adolescents and young adults (AYAs, 15‐39 years old) are an ideal population to benefit from the ever‐expanding number and variety of cancer information and health resources available via the Internet and other digital platforms. However, the ability of individual AYAs to fully utilize such resources depends on their degree of health literacy. Across the trajectory of cancer care, an important role for the oncology clinician is assisting AYAs and caregivers in accessing quality health information consistent with their level of health literacy. Working from the premise that all AYAs with cancer and their caregivers deserve to be empowered with maximal knowledge about their condition, this review provides information to assist oncology clinicians in (1) understanding the variety of contemporary online resources that are currently available, including their strengths and limitations; (2) evaluating the quality of health information; and (3) recommending specific health information resources to their AYA patients.     

Children's Oncology Group's 2013 blueprint for research: Adolescent and young adult oncology

The discipline of Adolescent and Young Adult (AYA) Oncology addresses compelling medical and psychosocial needs of AYA patients across the spectrum of cancer survivorship. To be successful, extraordinary collaboration involving multiple scientific disciplines and specialties is required. While AYA Oncology is international in scope, recent AYA‐focused studies conducted in the Children's Oncology Group (COG) have documented survival disparities, toxicity differences, and biological insights that provide the basis for new COG trials and initiatives for this population. This experience will be useful in leveraging the new United States National Cancer Institute Clinical Trials Network to transform AYA Oncology research. Pediatr Blood Cancer 2013; 60: 1055–1058. © 2012 Wiley Periodicals, Inc.     

Chronic Myeloid Leukemia in Children: Challenges and Opportunities

Treatment with tyrosine kinase inhibitors (TKI) is an effective therapy for children and adolescents with chronic phase of chronic myeloid leukemia (CML). For the majority of patients with CML in low- and middle-income countries (LMIC), imatinib is the TKI of choice for reasons of cost, availability, and experience. Children are exposed to therapy for a greater proportion of their lifetime as compared to adults. The adverse effects of prolonged administration of TKI is a subject of ongoing research, as more experience is collected. Therapy with TKI is currently considered to be life-long. Trials on stopping treatment are ongoing to explore if it may be feasible in selected patients, as reported in adults. Growth-failure is a concerning adverse effect. Currently, it seems unclear if the final height attained is within the expected range of the mid-parenteral height and growth standards. Whether the children will achieve a normal height at the end of their growth potential or remain below the predicted range is critical to decide if therapeutic interventions (E.g., growth hormone therapy, or interruption in TKI) should be considered during the period of growth potential. Research on CML in children is at a relatively slow pace, largely due to the rarity of the disease. This provides a unique opportunity for research in population-dense LMICs, as several tertiary centers tend to have a sizable cohort of children and adolescents with CML on follow-up. This narrative summarises the challenges and opportunities in dealing with CML in children, particularly in reference to a center in LMIC.