Stop and Think: A Case Study Illustrating the Implementation of Bright IDEAS-YA Being Delivered via Telehealth to a Young Adult Cancer Patient.

Bright IDEAS-Young Adults (Bright IDEAS-YA) is a problem-solving skills training intervention that has been adapted for young adults with cancer. Presently, a multisite randomized control trial is being conducted to determine Bright IDEAS-YA's efficacy in supporting a young adult population. This case study demonstrates the young adult adaptation of Bright IDEAS - Bright IDEAS-YA - being delivered to a young adult cancer patient via telehealth. Telehealth is a novel delivery method for Bright IDEAS and Bright IDEAS-YA that was established due to COVID-19 safety precautions. The patient, who reported challenges in several life domains, was taught how to apply the Bright IDEAS-YA framework over six telehealth sessions. After completing the Bright IDEAS-YA framework, the patient reported increased feelings of confidence in managing new stressors, which was corroborated through outcome measures delivered during and following intervention. This case illustrates how early psychosocial intervention following a cancer diagnosis, delivered via telehealth, can help patients develop and implement personal strategies to reduce stress levels.

Adolescent and Young Adult (AYA) Oncology, Version 2.2024, NCCN Clinical Practice Guidelines in Oncology.

This selection from the NCCN Guidelines for Adolescent and Young Adult (AYA) Oncology focuses on considerations for the comprehensive care of AYA patients with cancer. Compared with older adults with cancer, AYA patients have unique needs regarding treatment, fertility counseling, psychosocial and behavioral issues, and supportive care services. The complete version of the NCCN Guidelines for Adolescent and Young Adult (AYA) Oncology addresses additional aspects of caring for AYA patients, including risk factors, screening, diagnosis, and survivorship.

Psychosocial interventions and needs among individuals and families with Li-Fraumeni syndrome: A scoping review.

Li-Fraumeni syndrome (LFS), a rare cancer predisposition syndrome caused by germline mutations in the TP53 gene, is associated with significant lifetime risk of developing cancer and warrants extensive and long-term surveillance. There are psychosocial impacts on individuals and families living with this condition, from the initial diagnosis throughout multiple stages across the lifespan, but these impacts have not been systematically reviewed and organized. The objective of this scoping review was to synthesize and characterize the literature on psychosocial screening and outcomes, educational needs, support services, and available interventions for patients and families with LFS. A systematic search of six databases was most recently conducted in August 2020: (PubMed/MEDLINE (NLM), EMBASE (Elsevier), Cochrane Library (Wiley), CINAHL (EBSCO), PsycINFO (OVID), and Web of Science (Clarivate Analytics). A total of 15 757 titles were screened, and 24 articles included. Several important themes were identified across studies: factors associated with TP53 genetic testing, LFS surveillance, psychological outcomes, and communication. Findings related to these themes were organized into age-specific categories (age agnostic/across the lifespan, childhood, adolescence and young adulthood, and adulthood).

Comparison of neuropsychological functioning in pediatric posterior fossa tumor survivors: Medulloblastoma, low-grade astrocytoma, and healthy controls.

BACKGROUND: Neuropsychological comparison of medulloblastoma (MB) and cerebellar low-grade astrocytoma (LGA) survivors to controls can clarify treatment-related neurocognitive late effects. While both brain tumor groups undergo surgery to the posterior fossa, children with MB additionally receive craniospinal irradiation with boost and chemotherapy. This study provides an updated comparison of neuropsychological functioning in these two groups and examines effects of demographic risk factors upon outcomes. PROCEDURE: Forty-two children (16 MB, nine LGA, and 17 controls) completed measures of intellectual functioning, verbal learning/memory, visual-motor integration, and fine-motor functioning. The effects of age at diagnosis, time since diagnosis, gender, fatigue, and social status on neuropsychological functioning were examined. RESULTS: MB survivors demonstrated the worst neurocognitive late effects, but they were less severe and extensive than in prior studies. LGA survivors' mean scores were below normative expectations in working memory, processing speed, and fine-motor functioning. In this overall sample, processing speed difficulties were independent of fine-motor functioning and fatigue. Higher parental education was associated with better intellectual functioning, working memory, delayed recall, and visual-motor integration. Neuropsychological function was not associated with gender, age at diagnosis, or time since diagnosis. CONCLUSION: The results support that contemporary treatment approaches with craniospinal irradiation plus boost and chemotherapy confer the greatest risk for late effects, while surgical resection is associated with subtle but important neurocognitive difficulties. Ultimately, this study furthers our understanding of factors impacting neuropsychological function in pediatric MB and LGA survivors and contributes to empirical support for close monitoring and targeted interventions into survivorship.

Protocol of a Multisite Randomized Controlled Trial of Bright IDEAS-Young Adults: Problem-Solving Skills Training to Reduce Distress among Young Adults with Cancer.

BACKGROUND: Young adults with cancer diagnosed between the ages of 18 to 39 are recognized as a vulnerable group with unique emotional, social, and practical needs that put them at risk of poor psychosocial outcomes and impaired health-related quality of life (HRQOL). This study describes the protocol of a randomized controlled trial to evaluate the efficacy of Bright IDEAS-Young Adults (Bright IDEAS-YA), a problem-solving skills training intervention, on psychosocial outcomes of young adults newly diagnosed with cancer. METHODS: Bright IDEAS-YA is a two-arm, parallel, randomized controlled trial. Young adults are eligible if they are 18-39 years of age, within four months of a first cancer diagnosis, and receiving systemic therapy with life expectancy of at least six months. Participants are randomized 1:1 to Bright IDEAS-YA or enhanced usual care. Survey measures are completed at enrollment and 3, 6, 12, and 24 months. The primary endpoint will be the estimated change from baseline to 6 months in symptoms of depression, anxiety, and psychosocial HRQOL. The other time points are secondary endpoints. Mediators and moderators will be examined. CONCLUSIONS: This randomized trial will determine the efficacy of Bright IDEAS-YA on psychosocial outcomes for young adults newly diagnosed with cancer. Analyses will also examine mechanisms of action and potentially identify subgroups for whom the intervention is particularly useful. TRIAL REGISTRATION: clinicaltrials.gov #NCT04585269.

Executive and social functioning in pediatric posterior fossa tumor survivors and healthy controls.

Background: Executive and social functioning difficulty is well established in pediatric brain tumor survivors. Few studies have compared posterior fossa (PF) tumor survivors in comparison to their peers. The relationship between attention, processing speed, working memory, fatigue, and executive and social functioning was investigated to better understand the factors that impact executive and social functioning in PF tumor populations. Methods: Sixteen medulloblastomas, 9 low-grade astrocytomas (LGAs), and 17 healthy controls recruited from 4 sites completed measures of working memory and processing speed, and self-reported fatigue. One parent completed questionnaires on executive and social functioning. Results: There were no significant differences among all 3 groups on parent-reported executive and social functioning; of note, parents of LGA survivors expressed greater concerns regarding behavioral and cognitive regulation than did parents of medulloblastoma survivors and healthy controls. Parent-reported attention was related to parent-reported emotion, behavior, and cognitive regulation. Worse self-reported fatigue was associated with greater emotional dysregulation for the 2 PF tumor groups. Conclusions: Parents of PF tumor survivors described their children as performing similarly to their peers in most facets of executive and social functioning. While LGA survivors are traditionally thought to have more favorable outcomes, our finding of parent-reported executive functioning concerns to be worse for this group highlights the importance of long-term follow-up for all PF tumor survivors. Additionally, significant effects of attention on aspects of executive functioning in PF tumor survivors may inform current clinical practice and the future development of more effective interventions.

Psychosocial Needs and Preferences for Care among Adolescent and Young Adult Cancer Patients (Ages 15-39): A Qualitative Study.

Adolescents and young adults (AYAs) require a multidisciplinary approach to cancer care due to their complex biopsychosocial situations and varied developmental maturity. Currently, age and diagnosis determine referral to pediatric or adult oncology, with differing treatment paradigms and service utilization patterns, contributing to suboptimal improvements in outcomes. Understanding the unique perspectives of AYAs is essential to designing patient-centered AYA services. Thus, we conducted six focus groups with AYAs (n = 25) treated by medical or pediatric oncologists to evaluate: (1) the unique experiences of cancer care as an AYA; (2) AYA-specific information needs and communication preferences; and (3) recommendations for service provision, delivery and accommodations for AYAs. Transcripts were analyzed using inductive thematic content analysis and identified six major themes to inform clinically-actionable recommendations and the development of a patient-reported outcome measure: (1) AYAs experience social isolation and loss of independence; (2) AYAs have an uncertain sense of the future and need conversations around survivorship and long-term and late effects; (3) AYAs desire greater control over discussions with their care team; (4) AYAs need additional navigational and social/caregiver supports; (5) AYAs prefer an inclusive AYA space in the hospital; and (6) LGBTQ+ patients experience distinct concerns as AYA cancer patients. These will form the basis for specific and tailored clinical recommendations to improve AYA cancer care delivery.

Factors Associated with COVID­19 Vaccine Uptake Among Adolescents and Young Adults Recently Diagnosed with Cancer.

Adolescents and young adults (AYAs) recently diagnosed with cancer are medically vulnerable but little is known about vaccine uptake/intent in this group. AYAs reported on their COVID-19 vaccine uptake/intent. Logistic regression models examined factors associated with vaccine uptake. Higher education (adjusted odds ratio [aOR] = 1.9, 95% confidence interval [CI]: 1.0-3.5) and knowing someone diagnosed with COVID-19 (aOR = 7.2, 95% CI: 1.6-33.5) were associated with increased vaccine uptake. Prior personal diagnosis of COVID-19 (aOR = 0.1, 95% CI: 0.1-0.7) was associated with lower odds of uptake. Targeted interventions may be needed to improve uptake among this group. (ClinicalTrials.gov Identifier: NCT04585269).

Utilization of Psychotherapeutic Interventions by Pediatric Psychosocial Providers.

One of the Standards of Psychosocial Care for Children with Cancer and their Families recommends that all youth with cancer and their family members have access to psychotherapeutic interventions and support throughout the cancer trajectory. This study was created to identify the psychosocial interventions and services provided to children with cancer and their family members, to ascertain whether there are differences in interventions provided by age of the patient and stage of treatment, and to learn about barriers to psychosocial service provision. An online survey was disseminated to psychosocial providers through the listservs of national and international professional organizations. The majority of the 242 respondents were either psychologists (39.3%) or social workers (26.9%) and 79.7% worked in the United States. The intervention offered most often to pediatric patients, caregivers, and siblings, at every stage of treatment, was psychoeducation (41.7-48.8%). Evidence-based interventions, including cognitive behavioral therapy (56.6%) and mindfulness-based interventions (57.9%) were reported to be frequently used with patients. Interventions designed specifically for the pediatric oncology population were not commonly endorsed. Psychosocial providers reported quality of care would be improved by additional staff, better communication/collaboration with medical team members and increased community-based resources. Future research should focus on improving accessibility to population-specific evidenced-based interventions and translating science to practice.

Anxiety Among Adolescent Survivors of Pediatric Cancer.

PURPOSE: The purpose of this review was to synthesize current knowledge about anxiety among adolescent survivors of pediatric cancer and highlights areas for future research. METHODS: Systematic literature searches were conducted in five databases for articles published anytime before December 28, 2015. Manuscripts were reviewed by a team of six coders. Included manuscripts reported outcomes relevant to anxiety, worry, and post-traumatic stress in survivors of pediatric cancer (age at the time of study: 10-22 years) who were off treatment. RESULTS: Twenty-four articles met inclusion criteria. Included results were categorized into the following domains: post-traumatic stress, anxiety, cancer-related worry, and interventions. With the exception of post-traumatic stress, there was little research about anxiety in this population; however, studies generally indicated that adolescent survivors of pediatric cancer are at elevated risk for anxiety, post-traumatic stress symptoms, and cancer-related worry. CONCLUSIONS: This review provides preliminary evidence that anxiety is a relevant, but understudied, psychosocial outcome for adolescent survivors of pediatric cancer. More research is needed to better understand the presentation of anxiety in this population, its effect on survivors' quality of life, and possible areas for intervention.

Psychosocial outcomes and interventions among cancer survivors diagnosed during adolescence and young adulthood (AYA): a systematic review.

PURPOSE: A cancer diagnosis during adolescence or young adulthood (AYA; defined as ages 15-39) generates unique medical and psychosocial needs as developmental milestones are simultaneously impacted. Past research highlights that AYAs' experiences and psychosocial outcomes are different, and more research and attention is needed. We aimed to identify and synthesize literature regarding psychosocial outcomes, unique needs, and existing psychosocial interventions pertaining to individuals diagnosed with cancer exclusively during AYA, and to highlight areas for future research. METHODS: A systematic literature search was conducted using MEDLINE (via PubMed), EMBASE, Cochrane, Web of Science, and PsycINFO (via OVID). Grey literature was searched using key term variations and combinations. Overall, 15,301 records were assessed by two independent reviewers, with 38 studies meeting inclusion criteria. RESULTS: Data synthesis of the 38 articles was organized by four main themes based on quality of life and survivorship: physical well-being (7 studies), psychological well-being (8 studies), social well-being (9 studies), and survivorship care (14 studies). The paucity of studies for such broad inclusion criteria highlights that this population is often combined or subsumed under other age groups, missing needs unique to these AYAs. CONCLUSIONS: AYA cancer survivors' experiences are nuanced, with interacting variables contributing to post-treatment outcomes. AYAs require age-appropriate and flexible care, informational needs and treatment-related education that foster autonomy for long-term survivorship, as well as improved follow-up care and psychological outcomes. IMPLICATIONS FOR CANCER SURVIVORS: By incorporating these findings into practice, the informational and unmet needs of AYAs can be addressed effectively. Education and programming is lacking specific and general subject matter specific to AYAs, incorporating ranging needs at different treatment stages.

Health Behaviors of Childhood Cancer Survivors.

There has been a dramatic increase in the number of childhood cancer survivors living to an old age due to improved cancer treatments. However, these survivors are at risk of numerous late effects as a result of their cancer therapy. Engaging in protective health behaviors and limiting health damaging behaviors are vitally important for these survivors given their increased risks. We reviewed the literature on childhood cancer survivors' health behaviors by searching for published data and conference proceedings. We examine the prevalence of a variety of health behaviors among childhood cancer survivors, identify significant risk factors, and describe health behavior interventions for survivors.

Cancer-Related Disclosure Among Adolescent and Young Adult Cancer Survivors: A Qualitative Study.

Purpose: Adolescents and young adults (AYAs) employ self-disclosure in normative social interactions and in promoting identity development. Disclosure is associated with numerous psychological and physical benefits. Little research has examined how AYA cancer survivors diagnosed during adolescence disclose their cancer history. Methods: Using a qualitative design, this study explored cancer-related disclosures among survivors (N=26) 16-24 years old at study (M=19.6 years), 14-18 years old at diagnosis (M=15.6 years), and currently at least 6 months post-treatment (M=3.2 years). Semi-structured interview guides were developed and used. Disclosure-related topics included survivorship communications and others' responses to AYAs' disclosure of their cancer experiences. Results: Grounded theory and thematic content analysis guided analyses, with an inductive data-driven approach. Three themes and eight subthemes emerged: "it depends" decision-making processes (don't ask/don't tell, shared experience, relationship potential), perceptions of others' responses (perceived apprehension, positive responses), and methods of disclosure (verbal, written, behavioral). No thematic differences were found by gender or age, although females reported greater frequency of disclosures. Conclusion: Disclosure emerged as a nuanced and complex process. "It depends" decision-making processes were most frequently endorsed, consistent with developmental complexities of this age group. This reflects social and psychological changes and highlights unique challenges for AYA survivors. This also reflects the importance of peers and social interactions as variables that influence disclosure. In the context of AYA cancer survivorship, understanding ways in which disclosure may bolster or hinder social support can assist survivors, clinicians, and families navigate survivorship. Implications for future research are discussed.