Self-reported and Record-collected Late Effects in Long-term Survivors of Childhood Cancer: A Population-based Cohort Study of the Childhood Cancer Registry of the Rhone-Alpes Region (ARCERRA)

Purpose: We compared long-term health effects induced by childhood cancer or its treatments as reported by young adult survivors and as noted in their medical records. Patients and Methods: We analyzed and compared health problems reported by 192 young adults treated for childhood cancer between 1987 and 1992 who were included in the population-based childhood cancer registry of the Rhone-Alpes region and those effects inventoried by their healthcare providers in medical records. Results: Of 14 types of late effects studied, each patient reported experience of 0 to 11 (average 2.8 +/- 2.1), and their medical records indicated 0 to 8 (average 1.8 +/- 1.7) (P < .001). No late effect was reported by 10.4% of the 192 patients and/or noted in the medical records of 21.9% (P = .048). Only eight patients reported and were observed to experience none of the 14. Nine of the 14 were reported significantly more frequently by survivors than their medical records. Only one of eight survivors with cardiomyopathy reported its presence (P =. 008), whereas alopecia was reported 13 times by survivors, once by medical records, and three times by both (P = .001). Conclusion: The disparity between reports of late effects by survivors and medical records underscores the need for better communication between survivors and their health care providers. It is important to recognize the potential for bias from both under-and over-reporting in studies based only on survivor self-report. More thorough observation of late effects among survivors of childhood cancer might result from the implementation of a late-effects clinic.