ABSTRACT
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.
Subject(s)
Neoplasms , Humans , Adolescent , Young Adult , Needs Assessment , Pilot Projects , Feasibility Studies , Neoplasms/therapy , Surveys and QuestionnairesABSTRACT
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.
Subject(s)
Neoplasms , Humans , Adolescent , Young Adult , United States , Neoplasms/psychology , Delivery of Health CareABSTRACT
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.
Subject(s)
Lenalidomide , Leukemia, Myeloid, Acute , Aged , Antineoplastic Agents/adverse effects , Bayes Theorem , Cohort Studies , Humans , Lenalidomide/adverse effects , Leukemia, Myeloid, Acute/drug therapyABSTRACT
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.
Subject(s)
Clinical Trials as Topic , Neoplasms , Patient Participation , Adolescent , Adult , Ethnicity , Female , Hispanic or Latino , Humans , Insurance, Health , Male , Neoplasms/therapy , Patient Participation/statistics & numerical data , Registries , Young AdultSubject(s)
Bridged Bicyclo Compounds, Heterocyclic/adverse effects , Leukemia, Myeloid, Acute , Sulfonamides/adverse effects , Tumor Lysis Syndrome , Aged , Bridged Bicyclo Compounds, Heterocyclic/administration & dosage , Humans , Leukemia, Myeloid, Acute/blood , Leukemia, Myeloid, Acute/diagnosis , Leukemia, Myeloid, Acute/drug therapy , Leukemia, Myeloid, Acute/pathology , Male , Sulfonamides/administration & dosage , Tumor Lysis Syndrome/blood , Tumor Lysis Syndrome/diagnosis , Tumor Lysis Syndrome/pathologySubject(s)
Antimetabolites, Antineoplastic/adverse effects , Azacitidine/adverse effects , Clonal Evolution/drug effects , Leukemia, Myeloid, Acute/drug therapy , Philadelphia Chromosome/drug effects , Biopsy , Bone Marrow/pathology , DNA Mutational Analysis , Female , Fusion Proteins, bcr-abl/genetics , Humans , Leukemia, Myeloid, Acute/genetics , Leukemia, Myeloid, Acute/pathology , Middle Aged , Mutation , Treatment OutcomeABSTRACT
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.
Subject(s)
Caregivers/psychology , Evidence-Based Nursing , Neoplasms/nursing , Social Support , Humans , InternetABSTRACT
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.
Subject(s)
Language Tests/statistics & numerical data , Neuropsychological Tests/statistics & numerical data , Psychomotor Performance/physiology , Temporal Lobe/physiology , Visual Perception/physiology , Adolescent , Child , Child, Preschool , Cognition/physiology , Female , Frontal Lobe/anatomy & histology , Frontal Lobe/physiology , Functional Laterality/physiology , Humans , Linear Models , Magnetic Resonance Imaging/methods , Male , Occipital Lobe/anatomy & histology , Occipital Lobe/physiology , Temporal Lobe/anatomy & histology , Verbal Learning/physiologyABSTRACT
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 variationSubject(s)
Brain/anatomy & histology
, Adolescent
, Adult
, Age Factors
, Anisotropy
, Child
, Child, Preschool
, Diffusion Magnetic Resonance Imaging
, Female
, Humans
, Image Processing, Computer-Assisted
, Male
, Reproducibility of Results
ABSTRACT
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.