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.

Addressing Schooling in Children With Cancer-It's Everybody's Job, So It's Nobody's Job: An Explanatory Mixed-Methods Evaluation.

Background: Neurocognitive deficits from childhood cancer treatment are common, long-standing, and negatively impact multiple domains of life leading to challenges with schooling and education. The purpose of this study is to describe caregiver-reported experiences of neurocognitive effects from therapy and to understand the roles clinicians play in this domain in the United States. Methods: An explanatory mixed-methods study of 174 caregivers of children with cancer provided insight into how clinicians provided information on neurocognitive effects of treatment and their experiences with school-related resources. Clinicians provided descriptions of how they provide this information and assist families with accessing services or transition back to school after therapy. Results: Caregivers identified that physicians, nurses, and social workers primarily provide information regarding neurocognitive effects of treatment. Over half (55.9%) of families seek additional information elsewhere and 49.4% report doing so because the information they received from their team was inadequate. Nearly 40% of caregivers report accessing school supports feels like a constant fight and over 40% were not offered homebound educational services by their school. Qualitative interviews with providers found that clinicians focus on therapy-related physical symptoms of treatment and only discuss neurocognitive effects when prompted by families or when children are returning to school. Discussion: Clinicians' focus on physical symptoms and just-in-time thinking when it comes to providing education or school-related services may explain why families endorse infrequent education on the topic and challenges with school reintegration. Improved education for clinicians on this topic, integration of interdisciplinary teams, and new clinical practice models may improve the family experience.

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.

Quantifying calcium intake in school age children: development and validation of the Calcium Counts! food frequency questionnaire.

Quantifying dietary behavior is difficult and can be intrusive. Calcium, an essential mineral for skeletal development during childhood, is difficult to assess. Few studies have examined the use of food frequency questionnaires (FFQs) for assessing calcium intake in school-age children. This study evaluated the validity and reliability of the Calcium Counts! FFQ (CCFFQ) for estimating calcium intake in school children in the US. Healthy children, aged 7-10 years (n = 139) completed the CCFFQ and 7-day weighed food records. A subset of subjects completed a second CCFFQ within 3.6 months. Concurrent validity was determined using Pearson correlations between the CCFFQ and food record estimates of calcium intake, and the relationship between quintiles for the two measures. Predictive validity was determined using generalized linear regression models to explore the effects of age, race, and gender. Inter- and intra-individual variability in calcium intake was high (>300 mg/day). Calcium intake was approximately 300 mg/day higher by CCFFQ compared to food records. Concurrent validity was moderate (r = 0.61) for the entire cohort and higher for selected subgroups. Predictive validity estimates yielded significant relationships between CCFFQ and food record estimates of calcium intake alone and in the presence of such potential effect modifiers as age group, race, and gender. Test-retest reliability was high (r = 0.74). Although calcium intake estimated by the CCFFQ was greater than that measured by food records, the CCFFQ provides valid and reliable estimates of calcium intake in children. The CCFFQ is especially well-suited as a tool to identify children with low calcium intakes.