Providing Information About Late Effects During Routine Follow-Up Consultations Between Pediatric Oncologists and Adolescent Survivors: A Video-Based, Observational Study.

Abstract

Information about late effects is a prerequisite for survivors of childhood cancers to engage in self-management of their health. Yet, many lack such knowledge. This study investigated to what extent: (1) potential late effects were discussed with adolescent and young adult (AYA)-aged survivors (of pediatric cancer), and (2) information about late effects was provided by the pediatric oncologists (POs) during routine follow-up consultations. Consultations were recorded with 10 POs and 66 adolescents, aged 12-20 years, treated for leukemia (72.7%) or lymphoma (21.2%), or who had received hematopoietic stem-cell transplantation for a benign disease (7.6%). Discussions of potential late effects were identified and coded, and then the amount of information about late effects provided was categorized into three levels: none, basic, and extended information. Potential late effects were discussed in 85% of the consultations. Of these, 71% were PO initiated, and 60% concerned existing health problems. The POs provided none, basic, and extended information about late effects in 41%, 30%, and 29% of these discussions. Patients' age, time since treatment, and risk of late effects were not associated with amount of potential late effects discussed, but the type of potential late effect (physical vs. psychosocial and current vs. future risk) and PO were. Potential late effects were frequently discussed, thus providing ample opportunity to provide information about late effects to adolescent cancer survivors. The observed PO variability in providing such information indicates a need for standardization of information practices.