A Quality Improvement Initiative: Increasing Awareness of Long-Term Follow-Up Care in Pediatric Cancer Survivors and Caregivers

Less than half of childhood cancer survivors adhere to recommended follow-up care. We implemented an educational intervention to assess and improve their awareness of long-term follow-up care in pediatric solid and brain tumor survivors or caregivers, using quality improvement methodology. We assessed knowledge of the length of follow-up needed, reasons for recommended lifelong follow-up, and patient-specific late effects. The process was repeated over 3 consecutive visits to assess changes from baseline. Fifty-two patients underwent baseline visits. Twenty-four (22 caregivers, 92%) had 3 visits with the same respondent. From the first to third visit (median: 9.5, range: 6 to 16 mo), correct responses for follow-up duration increased from 29% to 88% ( P <0.001), and for naming at least 2 late effects increased from 71% to 96% ( P =0.04). Forty-five percent reported subjective anxiety after discussion about late effects at the first visit, and 54% rated their anxiety >5 on the 10-point scale. Anxiety levels remained unchanged over time. A structured educational intervention increased awareness of lifelong follow-up care while causing unintended subjective anxiety in cancer survivor caregivers. Comprehensive implementation of this intervention could potentially improve poor long-term follow-up rates in pediatric cancer survivors.