Chronic graft-versus-host disease adversely impacts school performance in children and young adults

Background: Chronic graft-versus-host disease (cGVHD) adversely impacts return to work for adult allogeneic hematopoietic stem cell transplant (HSCT) survivors, but no data exist on children with cGVHD transitioning back to school. We hypothesized that cGVHD adversely impacts broad aspects of school experience of children compared to their allogeneic-HSCT peers without cGVHD.

Methods: We conducted a single center cross-sectional pilot study using a 42-item questionnaire, investigating academic performance and social-emotional aspects of schooling pre-and post-HSCT. Forty allogeneic-HSCT patients of school-age completed the questionnaire, and responses were compared between patients with and without cGVHD.

Results: Twenty patients had cGVHD while 20 age or gender matched allogeneic-HSCT patients without cGVHD were controls. Ten of the 20 cGVHD patients experienced academic delays, of whom 2 were unable to resume or commence school due to cGVHD. All controls resumed/commenced school post-HSCT. Patients with cGVHD were chronically absent, as 8 of the 18 cGVHD patients missed ≥4 days of school per month post-HSCT compared to 0/20 controls (p≤0.001). Profound barriers to school participation specific to cGVHD were appreciated with an average of 3 concurrent barriers (range 1-7) ranging from physical appearance to clothing discomfort. Significant gaps in school services were identified as only 6 (33%) cGVHD had school accommodations post-HSCT.

Conclusions: Academic challenges and emotional and psychosocial impacts are profound. Future studies evaluating the feasibility of standardizing early school-based interventions are required.