Comparison of self-reported late effects with medical records among survivors of childhood cancer

摘要: Abstract Background Survival rates following childhood cancer have increased, but survivors experience significant late effects. Long-term follow-up is recommended imposes an increasing burden on health services. We report prevalence of morbidity in a cohort from South Yorkshire based on: (i) case-note analysis and (ii) self-reported effects (parent-reported for under-16s). Methods Treatment information was taken case-notes. Comparisons were made between described notes reported by 108 aged >16 years, 45 parents (12–15 years). Findings Of 892 patients diagnosed with some benign conditions registered hospital databases January 1990 to December 2005, 337 (37.8%) met eligibility criteria. Ninety-one (⩾16) (84.3%, confidence interval [CI]: 76.0–90.6) one or more (mean = 3.5; CI: 3.0–4.1), significantly higher than the number documented medical (mean = 0.7; 0.5–0.9; t  = −11.26, p  = 7.18, r  = 0.51, Interpretation confirm wide range experienced child cancer, greater those recorded notes, requiring care specialties. Decisions about need take account patient-reported concerns.