Factors influencing participation rates in clinical late-effect studies of childhood cancer survivors.

ABSTRACT

To ensure external validation of a study population in clinical late-effect studies of childhood cancer, the participation rate must be high. This study investigated demographic data in Nordic late-effect studies and potential factors impacting participation rates such as cancer type, time since diagnosis, and duration of clinical examinations. We found 80 published studies originating from 16 cohorts, with median follow-up of 6.0 years (range 3-14). The overall participation rates ranged from 27% to 100%. The highest participation rates were seen in studies of survivors with solid tumors (92%) and the lowest in hematologic malignancies (67%) and central nervous system tumors (73%). The clinical examination in 10 studies (62.5%) lasted for more than 3 hours. Neither duration of the clinical examination nor time since diagnosis seemed to affect the participation rate. We encourage future studies to describe the recruitment process more thoroughly to improve understanding of the factors influencing participation rates.