Academic Challenges and School Service Utilization in Children with Sickle Cell Disease.

OBJECTIVES: To describe the academic concerns and risk strata of children with sickle cell disease (SCD) as identified through a parent-directed screening tool and to compare the rates of these concerns with actual school service utilization in the clinic population. STUDY DESIGN: We completed a retrospective review of patients with SCD referred to the school intervention program during the 2017-2018 and 2018-2019 school years because of a school-related concern raised by parents or noted by the clinical team. All parents completed the Brief School Needs Inventory (BSNI), a validated parent-response tool used to stratify academic risk. Rates of special education services, grade retention, and results from neuropsychologic testing were captured. Clinical history, the use of disease-modifying therapy, and results from laboratory and neuroimaging studies were also obtained. Descriptive statistics were performed to examine demographic information, clinical history, and BSNI results. RESULTS: In total, 137 unique patients (age range, 14 months to 19 years) completed the BSNI during the study period, for 181 events. According to BSNI risk-stratification, 45% of patients were deemed low, 36% moderate, and 19% high academic risk. Over one-half of parents were concerned about their ability to advocate for their child's needs. Despite legal qualification for a Section 504 accommodation plan, only 20% had established plans. Academic concerns were common with 31% of children reporting an individualized education program and 20% with grade retention/remediation. CONCLUSIONS: Concerns for academic challenges remain high among parents of children with SCD; however, school service utilization remains disproportionately low attributable to numerous reasons.

Validity, reliability, and feasibility of the Brief School Needs Inventory: Evaluating educational risk for students with chronic health conditions.

OBJECTIVE: Researchers have increasingly emphasized the need to include routine educational and cognitive screening in the care plan for youth with chronic health conditions. Prior to now, a screener did not exist to asses risk/need in education in the pediatric setting; thus, this research aimed to examine the validity, reliability, and feasibility of the newly developed Brief School Needs Inventory (BSNI), which stratifies a patients level of educational risk/need in the context of a health condition. METHODS: The authors developed and pilot-tested two versions of an education risk screener utilizing a mixed-methods design, which included an expert panel review process and assessments for validity, reliability, and feasibility. RESULTS: Ninety-eight school-age survivors of an oncologic disease were assessed for educational risk. Participants were assigned to two groups and administered either the initial (n = 48) or revised (n = 50) version of the screener. The final version of the screener, the BSNI, predicted educational risk in congruence with school liaisons perceived risk assessment with 94% accuracy. Liaisons also reported confidence in the results of 98% of cases for the BSNI. Similarly, expert panel results for the BSNI indicated a high degree of interrater agreement and content validity. CONCLUSIONS: The BSNI was found to be a valid and reliable screener for predicting educational risk for youth with oncologic conditions; future studies will examine use of the screener within other pediatric chronic populations.

Communication is key: the utility of a revised neuropsychological report format.

OBJECTIVE: The neuropsychological report is a critical tool for communicating evaluation results to multiple audiences who have varying knowledge about neuropsychology and often have limited ability to review long, complex reports. Considerable time is spent writing these reports and challenges persist related to readability, length/complexity, and billable clinical time (which may be capped by third-party payors or families' ability to pay). METHODS: This quality improvement effort systematically evaluated the redesign of pediatric neuropsychological reports in an outpatient clinic serving primarily medical populations. RESULTS: Revised reports were shorter, with improved readability, structure, and effectiveness in communicating results and recommendations. Improved clinical efficiency was also observed. CONCLUSIONS: We suggest that adaptation to efficient, readable, and effective reports is possible within the practice of neuropsychology. Findings encourage replication in other settings. Through collaboration with key stakeholders, providers can identify their populations' and audience's unique needs and set report targets accordingly. To encourage that practice, we summarize our general process, provide a set of guidelines that can be adapted across multiple settings, and include an appended sample report.

Academic Continuity and School Reentry Support as a Standard of Care in Pediatric Oncology.

Clinicians agree that return to school after diagnosis promotes the positive adjustment of children and adolescents with cancer; however, the school reentry process can present challenges. The aim of this review was to critically evaluate the literature on school reentry support for youth with cancer. Seventeen publications were identified. School reentry services were well-received by families and educators; increased teacher and peer knowledge about childhood cancer; influenced peer and educator attitudes toward the patient; and improved communication and collaboration between patients/families, school, and the healthcare team. Evidence supports a strong recommendation for school reentry support for youth with cancer.

Coordination of care between health and education systems for patients with a hematologic or oncologic diagnosis: a time study analysis.

Given the increasing emphasis on care coordination between healthcare and schools, hospital-school liaison services are increasing in demand. Limited research examines hospital-school liaison programs that focus on educational journeys of school-age patients with a chronic illness. Thus, this initiative aimed to determine the time needed to support the educational needs of these patients. Liaisons tracked time spent per patient, and per specific task category, to support school-age patients (N=419) using work-sampling and time-and-motion methods. Findings may be useful for hospital-based programs seeking to establish or increase staff dedicated to the coordination of care between school and healthcare systems.