Communicating neurocognitive impacts of childhood cancer: Engaging stakeholders to identify research priorities.

OBJECTIVE: Supporting childhood cancer survivors with neurocognitive late effects is critical and requires additional attention in the research arena. This convening project's aim was to engage parents, healthcare providers, and education stakeholders in order to identify research priorities regarding patient/family-provider communication about neurocognitive impacts associated with childhood cancer. METHODS: Specific components of the Stakeholder Engagement in quEstion Development (SEED) method were combined with an online e-Delphi consensus building approach. Multiple modalities were utilized for engagement including in-person/hybrid meetings, email/Zoom/call communications, targeted-asynchronous learning activities by stakeholders, iterative surveys, and hands-on conceptual modeling. RESULTS: Twenty-four (parents n = 10, educators n = 5, healthcare providers n = 9) participated in the year-long project, generating 8 research questions in the stakeholder priority domains of training families/caregiver, access of neuropsychological assessment, tools to facilitate communication and training medical providers. CONCLUSIONS: This paper illustrates a successful stakeholder convening process using multi-modal engagement to establish research priorities. The resulting questions can be utilized to guide research projects that will fill gaps to providing optimal care to children with neurocognitive late effects. PRACTICE IMPLICATIONS: This process can be used as a template for tackling other healthcare issues that span across disciplines and domains, where stakeholders have rare opportunities to collaborate.

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.

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.

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.

Pediatric oncology provider perspectives and practices: Supporting patients and families in schooling after cancer diagnosis.

BACKGROUND: Cognitive limitations are common after childhood cancer and require assessment and support in the medical and school setting. Pediatric oncology providers are tasked with educating families about the side effects of disease/treatment, and supporting families as they navigate the associated challenges. Despite this important role, little is known about the training, practice, and knowledge of providers in the domain of cognitive/school impacts. METHODS: An online survey was emailed to Children's Oncology Group (COG) member physicians in the United States. The survey consisted of 42 questions about training and practice, and 4 knowledge questions about neurocognitive impacts and school supports. RESULTS: Surveys were completed by 282 physicians representing 64% of COG institutions and a diverse group of experience and institution size. The pediatric oncologist was reported most frequently (93%) as the person at their institution to provide information to families on this topic, yet 54% reported receiving no specific training in this area and the majority (66%) reported to only "somewhat" understand the issues pediatric oncology patients face when returning to school. A minority reported available institutional guidelines (42%) or screening tools (19%) to assist in making referrals or assessments. Knowledge questions concerning health conditions qualifying children for school supports received the fewest correct answers. The majority (77%) thought more training would be helpful. CONCLUSIONS: Additional training about cognitive impacts and schooling challenges associated with childhood cancer is needed to prepare providers to support parents/children. In addition, establishing policy guidelines and screening procedures may help support providers in providing care.

Parent perspectives on oncology team communication regarding neurocognitive impacts of cancer therapy and school reentry.

BACKGROUND: Neurocognitive deficits are common after childhood cancer and impact academic performance. Parents need to be knowledgeable of long-term complications impacting school and the resources necessary to support educational achievement. The oncology team plays an important role in preparing parents for the challenges of returning to school after treatment. METHODS: An online survey developed by parents and stakeholders was used to assess parent experiences and preferences associated with oncology team support around neurocognitive deficits and school transition. Recruitment included social media sites, foundation contacts, and clinic/event flyers. Topics included information content, timing, and frequency of information; and utility or perceived value of information. Inclusion criteria included respondent identifying as a parent (caregiver) of child treated for cancer who has returned to school. RESULTS: Surveys from 203 parents were completed representing diverse geographic locations. Nearly half (48%) did not recall receiving information about neurocognitive deficits. The most frequently reported time to receive this information was at diagnosis, but parents reported a need for conversations throughout the cancer trajectory, especially at transition to survivorship and school reentry. In addition, half of the parents (51%) felt inadequately prepared for the return to school. Information about neuropsychological testing, resources for learning difficulties, educational terms, and legal rights related to school services were the topics most inadequately provided. CONCLUSIONS: Parents feel inadequately prepared by their oncology team for their child's return to school. Research is needed to identify effective oncology team approaches to fill the gaps in knowledge around school reentry after cancer treatment.

Bayesian brain source imaging based on combined MEG/EEG and fMRI using MCMC.

A number of brain imaging techniques have been developed in order to investigate brain function and to develop diagnostic tools for various brain disorders. Each modality has strengths as well as weaknesses compared to the others. Recent work has explored how multiple modalities can be integrated effectively so that they complement one another while maintaining their individual strengths. Bayesian inference employing Markov Chain Monte Carlo (MCMC) techniques provides a straightforward way to combine disparate forms of information while dealing with the uncertainty in each. In this paper we introduce methods of Bayesian inference as a way to integrate different forms of brain imaging data in a probabilistic framework. We formulate Bayesian integration of magnetoencephalography (MEG) data and functional magnetic resonance imaging (fMRI) data by incorporating fMRI data into a spatial prior. The usefulness and feasibility of the method are verified through testing with both simulated and empirical data.

Reproducibility of activation in Broca's area during covert generation of single words at high field: a single trial FMRI study at 4 T.

Although functional magnetic resonance imaging (FMRI) has arguably become the most ubiquitously used imaging modality, questions remain about the reproducibility of the observed patterns of activation and the acquisition time required to achieve statistically significant and reproducible maps. In the current study, we investigated the reliability of activation in Broca's area, on both a voxel-wise and region of interest level, in response to the covert generation of a single word at 4 T. We also assessed the effects of different parametric (P < 0.01; P < 0.005; P < 0.001) and spatial thresholds (25%, 50% and 75%) on the reproducibility of activation within our region of interest and other randomly selected areas of the brain. We report that the inter-trial consistency of activation within Broca's area for a single trial design using multi-echo EPI is roughly equivalent to previous studies that averaged across a much larger number of trials. However, reliability estimates varied dramatically (approximately 55%) depending on the different parametric and spatial criteria thresholds that were applied to the data. These results show that increased sensitivity at high field strength can be used to reduce the time needed to localize functional activation patterns, which is beneficial for clinical studies such as pre-surgical mapping. Additional benefits of single trial designs, such as the ability to immediately assess for extraneous cognitive processes, are also discussed.

Spatiotemporal Bayesian inference dipole analysis for MEG neuroimaging data.

Recently, we described a Bayesian inference approach to the MEG/EEG inverse problem that used numerical techniques to estimate the full posterior probability distributions of likely solutions upon which all inferences were based [Schmidt, D.M., George, J.S., Wood, C.C., 1999. Bayesian inference applied to the electromagnetic inverse problem. Human Brain Mapping 7, 195; Schmidt, D.M., George, J.S., Ranken, D.M., Wood, C.C., 2001. Spatial-temporal bayesian inference for MEG/EEG. In: Nenonen, J., Ilmoniemi, R. J., Katila, T. (Eds.), Biomag 2000: 12th International Conference on Biomagnetism. Espoo, Norway, p. 671]. Schmidt et al. (1999) focused on the analysis of data at a single point in time employing an extended region source model. They subsequently extended their work to a spatiotemporal Bayesian inference analysis of the full spatiotemporal MEG/EEG data set. Here, we formulate spatiotemporal Bayesian inference analysis using a multi-dipole model of neural activity. This approach is faster than the extended region model, does not require use of the subject's anatomical information, does not require prior determination of the number of dipoles, and yields quantitative probabilistic inferences. In addition, we have incorporated the ability to handle much more complex and realistic estimates of the background noise, which may be represented as a sum of Kronecker products of temporal and spatial noise covariance components. This reduces the effects of undermodeling noise. In order to reduce the rigidity of the multi-dipole formulation which commonly causes problems due to multiple local minima, we treat the given covariance of the background as uncertain and marginalize over it in the analysis. Markov Chain Monte Carlo (MCMC) was used to sample the many possible likely solutions. The spatiotemporal Bayesian dipole analysis is demonstrated using simulated and empirical whole-head MEG data.