University of North Carolina adolescent and young adult cancer program: reach and characteristics of care.

Cancer care organizations often struggle to adequately address the unique needs of adolescent and young adult cancer patients, resulting in poorer outcomes compared with other age groups. Creation of adolescent and young adult cancer programs serves to bridge this gap and improve quality of care for this population. We aimed to describe the evolution and impact of the University of North Carolina at Chapel Hill's Adolescent and Young Adult Cancer Program. To do so, we conducted a retrospective cohort study utilizing electronic health record data matched with North Carolina Cancer Registry data from 2014 to 2022. Between 2014 and 2022, a total of 4016 adolescents and young adults (aged 13-39 years) received cancer care at the University of North Carolina Medical Center, with 670 having contact with the Adolescent and Young Adult Cancer Program. Program-contacted patients were younger, more likely to be non-Hispanic Black race, and more likely to have metastatic disease or hematologic malignancies. We saw a steady increase in patient volume over the study period, corresponding with program growth.

The Adolescent and Young Adult Needs Assessment & Service Bridge (NA-SB): A single-arm feasibility pilot study.

PURPOSE: In this pilot study, we evaluated the feasibility of implementing the Needs Assessment & Service Bridge (NA-SB)- an intervention to address the pervasive unmet needs of adolescents and young adults (AYAs) during cancer treatment. METHODS: We conducted a mixed methods single-arm feasibility pilot study of NA-SB at the North Carolina Basnight Cancer Hospital. Eligible participants were AYAs ages 18-39 in active cancer treatment. After receiving NA-SB, participants completed a postintervention survey assessing their perceptions of NA-SB. We interviewed participating providers to assess their implementation experiences. RESULTS: On average, AYA participants (n = 26) rated NA-SB's feasibility as 4.5/5, its acceptability as 4.5/5, and its appropriateness as 4.4/5. 77% of participants agreed or strongly agreed that their needs were met in the study period. CONCLUSION: This pilot study generated preliminary evidence to establish NA-SB's feasibility as well as proof of concept for the intervention as a viable approach for identifying and addressing AYAs' unmet needs.

Developing a Comprehensive Adolescent and Young Adult Cancer Program: Lessons Learned from 7 Years of Growth and Progress.

Purpose: Every year, nearly 100,000 adolescents and young adults (15-39 years, AYAs) are diagnosed with cancer in the United States and many have unmet physical, psychosocial, and practical needs during and after cancer treatment. In response to demands for improved cancer care delivery for this population, specialized AYA cancer programs have emerged across the country. However, cancer centers face multilevel barriers to developing and implementing AYA cancer programs and would benefit from more robust guidance on how to approach AYA program development. Methods: To contribute to this guidance, we describe the development of an AYA cancer program at the University of North Carolina (UNC) Lineberger Comprehensive Cancer Center. Results: We summarize the evolution of UNC's AYA Cancer Program since it was established in 2015, offering pragmatic strategies for developing, implementing, and sustaining AYA cancer programs. Conclusion: The development of the UNC AYA Cancer Program since 2015 has generated many lessons learned that we hope may be informative to other cancer centers seeking to build specialized services for AYAs.

Phase Ib trial of lenalidomide as post-remission therapy for older adults with acute myeloid leukemia: Safety and longitudinal assessment of geriatric functional domains.

BACKGROUND AND OBJECTIVES: Novel, non-cytotoxic agents are driving a paradigm shift for treatment of older adults with acute myeloid leukemia (AML). Older patients who initially receive intensive cytotoxic induction may choose to not proceed with cytotoxic consolidation therapy. Lenalidomide is an orally-administered immunomodulatory small molecule with activity in AML and a favorable safety profile in older adults with active leukemia. We conducted a phase Ib study of lenalidomide as post-remission therapy in older adults and assessed its impact on geriatric functional domains. MATERIALS AND METHODS: Participants were patients with AML over age 60 years who had undergone induction therapy and were poor candidates for cytotoxic consolidation. Lenalidomide was administered for 28 days in three dose cohorts. A Bayesian dose-escalation method determined cohort assignment and maximum tolerated dose (MTD). Geriatric assessment (GA) was performed before and after the cycle of lenalidomide. RESULTS: Nineteen patients with median age 68 were treated with at least one 28-day course of lenalidomide. Dose-limiting toxicities were observed in three participants at 25 mg, zero participants at 35 mg, and one participant at 50 mg. MTD was 35 mg. Median relapse-free survival was 4.3 months. GA was completed before and after treatment in fifteen patients, demonstrating improved cognitive function and no changes in physical, psychological, or social function after lenalidomide. CONCLUSION: Lenalidomide can be safely administered to older adults with AML with preservation of functional domains important to older patients. Serial GA can be performed in a novel drug study as a tool to characterize treatment tolerability.

Health Insurance Payer Type and Ethnicity Are Associated with Cancer Clinical Trial Enrollment Among Adolescents and Young Adults.

Purpose: Adolescents and young adults (AYAs) have experienced inferior improvements in cancer survival outcomes. One potential explanation is the low rate of enrollment in cancer clinical trials. While the reasons behind this are multifactual, sociodemographic factors are probably contributory. We examined the impact of factors such as insurance type and race/ethnicity on clinical trial enrollment among AYAs treated for cancer at an academic medical center. Methods: We identified AYAs (ages 15-39 years) treated for cancer at the University of North Carolina between April 2014 and April 2019. Cancer registry data were linked to electronic health record data to associate treatment and sociodemographic factors with clinical trial enrollment. A multivariable log-binomial model was used to estimate adjusted risk ratios. Results: In a 5-year period, 1574 AYA patients were identified, 59% female, 21% non-Hispanic Black and 9% Hispanic. Overall, 37% of AYAs participated in any clinical trial and 14% enrolled on a therapeutic trial. When compared to publicly insured AYAs, those with private insurance [adjusted RR: 1.52, 95% CI: 1.05-2.22] or with no insurance [adjusted RR: 2.12, 95% CI: 1.34-3.33] were more likely to enroll in a therapeutic clinical trial. Hispanic AYAs were less likely to enroll [adjusted RR: 0.50, 95% CI: 0.27-0.93] when compared to non-Hispanic White patients. Conclusions: Rates of clinical trial enrollment among AYAs vary based on health insurance type and race/ethnicity, suggesting possible disparities in access. Attention to resource, cultural, and language barriers may improve trial enrollment and cancer outcomes among vulnerable AYA subpopulations.

Putting together the pieces of the puzzle: identifying existing evidence-based resources to support the cancer caregiver

Caring for the caregivers of patients with cancer is an increasingly important part of cancer care. In the past few years, several cancer centers have started caregiver-focused services and programs. However, the number of centers that offer such programs and what they provide is unclear. This article will review the extent to which the 61 National Cancer Institute-designated cancer centers that primarily provide patient care also offer evidence-based support programs for caregivers.

Relationship of temporal lobe volumes to neuropsychological test performance in healthy children.

Ecological validity of neuropsychological assessment includes the ability of tests to predict real-world functioning and/or covary with brain structures. Studies have examined the relationship between adaptive skills and test performance, with less focus on the association between regional brain volumes and neurobehavioral function in healthy children. The present study examined the relationship between temporal lobe gray matter volumes and performance on two neuropsychological tests hypothesized to measure temporal lobe functioning (visual perception-VP; peabody picture vocabulary test, third edition-PPVT-III) in 48 healthy children ages 5-18 years. After controlling for age and gender, left and right temporal and left occipital volumes were significant predictors of VP. Left and right frontal and temporal volumes were significant predictors of PPVT-III. Temporal volume emerged as the strongest lobar correlate with both tests. These results provide convergent and discriminant validity supporting VP as a measure of the "what" system; but suggest the PPVT-III as a complex measure of receptive vocabulary, potentially involving executive function demands.

Diffusion tensor imaging in children and adolescents: reproducibility, hemispheric, and age-related differences.

UNLABELLED: We evaluated intra-rater, inter-rater, and between-scan reproducibility, hemispheric differences, and the effect of age on apparent diffusion coefficient (ADC) and fractional anisotropy (FA) in healthy children (age range 5.5-19.1 years) examined with a clinical diffusion tensor imaging (DTI) protocol at 1.5 T, using a region of interest (ROI) methodology. Measures of reliability and precision were assessed in six ROIs using two different ROI shapes (polygonal and ellipsoidal). RESULTS: Highly reproducible values of ADC and FA were obtained with the polygonal method on intra-rater (coefficients of variation

Serial neuropsychological assessment and evidence of shunt malfunction in spina bifida: a longitudinal case study.

Myelomeningocele is often accompanied by hydrocephalus (MMH), making it a potentially unstable neurological condition requiring shunt placement and possible revisions. Serial neuropsychological assessment is an important tool in monitoring children with MMH, as cognitive changes can indicate shunt malfunction and hydrocephalus. We present the case of a girl with MMH who had five neuropsychological assessments (ages 5, 7, 11, 12, and 14). Despite a lack of overt neurological symptoms or report of behavioral decline, testing at age 11 revealed decline in multiple neurobehavioral domains, and imaging at that time showed increased hydrocephalus, requiring shunt revision. Subsequent neuropsychological assessment conducted after a 2-year period of medical stability showed improvement and/or a return to baseline levels in some skill areas (i.e., working memory, verbal memory, visuomotor integration, and sustained attention), yet more lasting impairments in others (i.e., Verbal IQ, processing speed, organization, and response inhibition). These lasting cognitive deficits potentially impact independent completion of complex medical self-care tasks. This pattern of recovery highlights vulnerability of brain systems supporting executive functions in children with hydrocephalus and shunt failure.