Why Psychosocial Care Matters: Parent Preparedness and Understanding Predict Psychosocial Function When Children Return to School After Cancer.

Introduction: Psychosocial impacts of cancer are well-recognized for pediatric patients but few studies examine challenges specific to schooling after diagnosis and caregiver-related factors that may influence coping. This study describes caregiver experiences of school-related psychosocial functioning and how caregiver preparedness and understanding of these challenges influence coping. Methods: Caregivers of 175 childhood cancer survivors completed a nationally disseminated survey related to caregiver preparedness, clinician-provided education, and school-related experiences. Caregiver-reported preparedness and understanding were evaluated as predictors of psychosocial coping; factor analysis was performed to identify compound scales of preparedness and understanding. Results: Caregivers reported that the cancer treatment experience resulted in their children being more stressed and anxious about returning to school (60.2% and 70.2%, respectively) and more sensitive to peers (73.4%). It also made it harder for them to socialize and fit in with peers (58.2% and 49.7%, respectively). Caregiver preparedness and understanding predicted improved psychosocial coping with regard to child stress regarding socialization, fitting in, and anxiety but not sensitivity to peers. Teacher supportiveness and caregiver perception of clinician understanding also correlated with function. Discussion: Findings highlight the importance of caregiver education and preparedness as these reliably predict child psychosocial function and coping as they return to school after a cancer diagnosis and that all children are at risk for psychosocial challenges following a cancer diagnosis. Opportunities exist for clinicians to provide more education and anticipatory guidance to families as a potential means to reduce poor coping when a child returns to school following cancer.

Improved parent self-efficacy following pediatric evaluation: Evidence for value of a telemedicine approach in psychological and neuropsychological assessment.

Objective: While considerable inquiry is currently underway into the comparability of psychological test results obtained in onsite/in-person settings versus telemedicine settings, there has been less attention given to the comparability of the impact/outcome of the assessment process across settings. The current quality improvement study conceptualized impact/outcome according to the model of Austin et al. and sought to determine whether the prior finding of increased parent self-efficacy following onsite neuropsychological assessment was also observed when psychological and neuropsychological assessment was conducted via a telemedicine modality. Method: In the course of standard care delivery, ratings from Austin et al.'s four parent self-efficacy items were obtained at time 1 prior to patients' assessment visits and then again at time 2 either (1) following their last assessment/feedback visit (the Complete Assessment group; n = 157) or (2) in the middle of the assessment process prior to the last planned visit (the Incomplete Assessment group; n = 117). Results: Analyses revealed significant findings for time and time × group. Parent self-efficacy ratings improved over time in both groups, with significantly higher ratings in the Complete Assessment group at time 2. When compared to reference means from the in-person/onsite Austin et al. study, ratings from the current study found comparable improvement in parent self-efficacy achieved via telemedicine assessment in the Complete Assessment group. Conclusions: These data support the use of telemedicine based psychological and neuropsychological evaluation and provide preliminary evidence that the impact/outcome is comparable with in-person/onsite assessment.

Strategies to improve communication about neurocognitive impacts in pediatric oncology: Quality improvement findings.

BACKGROUND: Neurocognitive deficits are common among children who receive central nervous system (CNS)-directed therapy for childhood cancer. Parents report that they lack information from and communication with oncology providers about neurocognitive impacts of therapy. Furthermore, oncology providers report they lack training and institutional support to appropriately address the neurocognitive needs of these patients/families. METHODS: A parent/provider stakeholder informed, quality improvement (QI) project was conducted to educate providers about neurocognitive impacts, increase parent/provider communication, and improve adherence to supportive care guidelines for neuropsychological assessment for children receiving CNS-directed therapy. A 1-h Continuing Medical Education (CME) course was developed to educate providers about neurocognitive impacts and their relation to schooling. A provider-focused electronic medical record (EMR) strategy was used to deliver parent stakeholder-informed return-to-school "roadmaps," with prompts to scaffold parent/provider communication and enhance documentation of findings. RESULTS: Hospital-based CME sessions were attended by 76% (41 out of 54) of providers from our institution. Among the 34 who completed both pretest and posttest, the mean knowledge score improved from 56% at pretest to 74% at posttest. Compliance with the EMR strategy was 80% and there was a 42% increase in neuropsychological assessment referrals. CONCLUSIONS: We conclude that this QI project is an example of a successful parent/provider stakeholder collaboration that achieved demonstrable positive change in the areas of provider knowledge, patient/provider communication, and alignment of neuropsychological assessment referrals with existing guidelines. Our results confirm that improving knowledge, communication, and compliance with neuropsychological standards of care is possible with this evidence-based approach.

A Rocky Landscape: Challenges with College Transition and Completion for Adolescents and Young Adults with Cancer.

Purpose: Adolescents and young adults with cancer have lower college attendance and graduation rates than their peers, but the reasons for this and extent to which cancer impacts college is unknown. This study explores post-high school experiences of young adults with cancer, detailing impacts of diagnosis and treatment on higher education attainment. Materials and Methods: A convergent mixed-methods design disseminated nationally obtained data regarding post-high school transition experiences in adults diagnosed with cancer before age 25. Results: Participants (n = 47) indicated struggles with employment and education; 81% attended some college, but 44% have not completed their degree, citing logistic challenges and lasting effects of therapy as major barriers. Nearly 20% of participants reported that cancer made higher education too difficult, so they did not attend, and most of these individuals (66.6%) are unemployed. Qualitative findings detail that accessing appropriate accommodations was made difficult by a lack of understanding from college faculty and staff. Conclusion: For many, cancer presents a barrier to higher education attainment; changing course of studies, repeating classes, and switching majors may impact degree completion. A minority of students with cancer access educational supports or get assistance obtaining these resources from their medical or high school team. Changes to clinical practice to ensure supports for young adults transitioning from high school have the potential to create improved pathways to higher education success. Additionally, supporting college faculty and staff understanding of cancer and its late effects may be a low-cost, high-impact way to improve adolescent/young adult college success.

Childhood Cancer Survivors and Distance Education Challenges: Lessons Learned From the COVID-19 Pandemic.

OBJECTIVE: Pediatric cancer survivors have historically struggled to receive adequate educational supports. In Spring 2020, the COVID-19 pandemic forced an emergency switch from traditional in-person education models to distance education, but little information is available regarding experiences of pediatric survivors' coping with schooling since that time. METHODS: This article presents exploratory mixed methods findings from a quality improvement project including qualitative interviews and a quantitative survey conducted with parents of pediatric oncology survivors identified through neuropsychological assessment, and the use of school-based services as having educationally relevant neurocognitive impacts of disease or treatment. The interviews explored experiences of education and instructional delivery during the COVID-19 school closures in spring of 2020 and the beginning of the 2020-2021 school year and served as the foundation for a quantitative survey to determine the generalizability of findings. RESULTS: Qualitative interviews highlighted 3 emergent themes regarding the shared experiences of distance schooling for children with cancer during the COVID-19 school closures: (a) attention, (b) mental health, and (c) access to instruction. A follow-up quantitative survey supported the qualitative findings and their generalizability to the schooling experiences of other children with cancer during the pandemic. CONCLUSION: This article describes and explores each theme and offers suggestions for pediatric supports and changes to provider service delivery (including weblinks to access project-developed resources) as a result of ongoing pandemic-related schooling needs.

Does Movement Matter? Prefrontal Cortex Activity During 2D vs. 3D Performance of the Tower of Hanoi Puzzle.

In the current study, we used functional near-infrared spectroscopy (fNIRS) to compare prefrontal cortex (PFC) activity in adults as they performed two conditions of the Tower of Hanoi (ToH) disk-transfer task that have equivalent executive function (EF) but different motor requirements. This study explored cognitive workload, here defined as the cognitive effort utilized while problem-solving by performance output. The first condition included a two-dimensional (2D) computerized ToH where participants completed trials using a computer mouse. In contrast, our second condition used a traditional, three-dimensional (3D) ToH that must be manually manipulated. Our aim was to better understand the role of the PFC in these two conditions to detect if PFC activity increases as a function of motor planning. Twenty right-handed, neurotypical adults (10M/10F, x ¯ = 24.6, SD ± 2.8 years old) participated in two blocks (one per condition) of three 1-min trials where they were asked to solve as many puzzles as possible. These data were analyzed using a mixed effects ANOVA with participants nested within blocks for 2D vs. 3D conditions, presentation order (leading block), individual participants, and regions and additional follow-up statistics. Results showed that changes in oxygenated hemoglobin, ΔHbO, were significantly higher for 3D compared to 2D condition (p = 0.0211). Presentation order and condition interacted significantly (p = 0.0015). Notably, a strong correlation between performance and ΔHbO existed between blocks 1 and 2 (r = -0.69, r 2 = 0.473, p < 0.01) when the 3D condition was initially performed, in contrast to the 2D condition where no significant correlation was seen. Findings also showed a significant decrease in ΔHbO between the first and second block (p = 0.0015) while performance increased significantly for both 3D and 2D conditions (p < 0.005). We plan to use this information in the future to narrow the potential points of impairment on the perception-cognition-action continuum in certain developmental disabilities.