Follow-up programs for childhood cancer survivors in Europe: a questionnaire survey

For many childhood cancer survivors follow-up care is important long after treatment completion. We aimed to describe the availability and characteristics of long-term follow-up programs (LTFU) across Europe, their content and aims, their problems, and to assess opinions on different models of LTFU.

We asked 179 pediatric oncology institutions in 20 European countries to complete an online survey on LTFU available at their institution. Of 110 respondents (62% response), 66% reported having LTFU for pediatric survivors, 38% for adult survivors of childhood cancer. Availability varied widely across European regions, from 9% of institutions in Northern Europe reporting LTFU for adult survivors to 83% of institution on the British Isles reporting LTFU for pediatric survivors. Pediatric and adult LTFU were usually located in pediatric hospitals and run by pediatric oncologists. Content of follow-up included screening for adverse outcomes and health education. Important problems included lack of time, personnel and funding. Most institutions without LTFU reported that they would like to offer a program (86%).

Despite general agreement on the need of follow-up care, there is still a lack of well-organized LTFU for survivors of childhood cancer across Europe.