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.

Cardiovascular Health Status And Genetic Risk In Survivors of Childhood Neuroblastoma and Nephroblastoma Treated With Doxorubicin: Protocol of the Pharmacogenetic Part of the LESS-Anthra Cross-Sectional Cohort Study

“…They found that overall participation rates ranged from 27% to 100% and speculated that more personalized recruitment strategies could increase participation rates. Our preliminary results confirm the finding that time since diagnosis does not influence participation [ 27 ]. Age at diagnosis also does not have a measurable impact.…”

“…The overall participation rate in the LESS-Anthra study was only 30%, and not all LESS-Anthra participants were also willing to participate in the pharmacogenetic substudy. The participation rate is at the lower end of the range of figures reported in the literature [27]. We attempted to give as many eligible patients as possible the opportunity to participate, regardless of whether or not they were followed up closely.…”

“…Recruitment would likely be more successful if limited to patients in regular follow-up care who were invited and personally approached by the follow-up physician. Helligsoe et al [ 27 ] addressed study participation in childhood cancer survivors in clinical late-effect studies [ 27 ]. The authors analyzed 80 published studies originating from 16 cohorts, with a median follow-up of 6.0 years.…”