Role of Educational Support Intervention for Children Diagnosed with Cancer

Background: Childhood cancer rates continue to increase while mortality rates decrease, prompting the need for long-term childhood educational supports. Children with brain tumors have absentee rates nearly twice the average of non-chronically ill counterparts. Academic absenteeism, in conjunction with neurocognitive sequelae of cancer pathology and intellectual deficits from treatment (e.g. cranial radiation therapy (CRT), chemotherapy) renders this cohort at significant risk for low academic performance. As such, they may benefit from interventions that facilitate return to school (school reentry) and support services such as Individualized Education Plan (IEP) or Section 504 plan (504). This collaboration between hospital and academic teams has been recommended by specialty groups and when trialed has been well-received by parents and teachers. Despite their utility, hospital-based school programs are uncommon with only half of existing programs associated with outpatient clinics. We present here the Riley Hospital for Children School Program’s (RHCSP) educational liaison services in an outpatient Oncology setting.

Methods: The RHCSP educational liaison supports from 8/2016-6/2020 were considered. Interventions facilitated school reentry and provided educational supports, in the form of IEP/504 development, following provider referral or internal RHCSP “handoff”. Data collection has been dynamic with frequent modifications over time. Information coded and analyzed by the research team represents final patient contact with RHCSP in an academic year. Data of those listed with inapplicable or unknown diagnosis were excluded (N = 4) from analysis.

Results: RHCSP offered educational support services to 489 patients (8/2016-6/2020), 72.5% growth (diagnoses detailed Table 1). The initiation or modification of an IEP or 504 was used as a proxy for RHSCP interventions where 46% were recorded as receiving services, including Brain Tumors (51.4%), Leukemia (43.6%), Lymphoma (43.5%) and Other Cancers (44.3%) (Table 1). Overall, more patients required initiation and/or modification of a 504 (N = 154). However, children diagnosed with Brain Tumors were more likely to have an IEP (54.8%) (Figure 1a).

Conclusion: Outpatient-based school intervention is increasingly important to address academic disruption demonstrated in children affected by chronic disease which may be heightened in those diagnosed with cancer given the rigor of treatment or prolonged surveillance. The RHCSP seeks to minimize this impact. From 8/2016-6/2020, the highest rate and intensity of intervention were observed for those with Brain Tumors (51.4%), possibly from impact on neurocognition and brain development. Although 46% of RHSCP consults received academic intervention, considering the incomplete data (54%, N = 264) we speculate this may be an underestimation of need. Variation in the type of educational supports (IEP or 504) was likely attributable to the accommodations’ structure. With consideration of the substantial growth of the RHCSP and evidenced utility of educational support among children diagnosed with cancer, further efforts should address the development of standardized school reentry and long-term assistance protocols.