Knowledge of Late Effects Risks and Healthcare Responsibility in Adolescents and Young Adults Treated for Childhood Cancer.

Objective: This study aimed to examine the level and predictors of knowledge of late effects risks from childhood cancer treatment in adolescent and young adult (AYA) survivors.

Methods: Seventy-three AYAs, aged 14-21, completed measures of knowledge of late effect risks, executive functioning, and responsibility for health self-management. Sixty-seven parents of these AYA survivors (91.7%) also participated.

Results: Survivors demonstrated poor knowledge of their unique risks for treatment-related late effects, with a mean accurate knowledge score of 54.29% (SD = 24.19%). The number of late effects for which survivors were at risk was negatively correlated with risk knowledge (r = -.34, p < .01). Survivors' executive functioning was not related to risk knowledge. In regression analyses, survivor age positively predicted accurate knowledge of late effects risks, and the number of late effects risk was a negative predictor. In separate models, survivor self-report of AYA responsibility for health self-management did not predict knowledge (R2 = .39, F = 10.86, p < .01), but parent proxy-report was a significant positive predictor (R2 = .38, F = 9.62, p < .01). Parental involvement was not a significant predictor in either model.

Conclusion: There are significant knowledge gaps among AYA survivors of childhood cancer, which appear to be related to younger AYA age and lower levels of AYA responsibility for health self-management. Additional intervention is critical to increase AYA knowledge of their risk for late effects in order to promote continued engagement in long-term follow-up care and surveillance across the lifespan.