title: Comparison of self-reported late effects with medical records among survivors of childhood cancer.
abstract: BACKGROUND
  Survival rates following childhood cancer have increased, but survivors experience significant late effects. Long-term follow-up is recommended but imposes an increasing burden on health services. We report prevalence of morbidity in a cohort of survivors from South Yorkshire based on: (i) case-note analysis and (ii) self-reported late effects (parent-reported for under-16s).
  
  
  METHODS
  Treatment information was taken from case-notes. Comparisons were made between late effects described in notes and reported by 108 survivors aged >16 years, and 45 parents of survivors (12-15 years).
  
  
  RESULTS
  Of 892 patients diagnosed with childhood cancer and some benign conditions registered on hospital databases from January 1990 to December 2005, 337 (37.8%) met eligibility criteria. Ninety-one survivors (16) (84.3%, confidence interval [CI]: 76.0-90.6) reported one or more late effects (mean=3.5; CI: 3.0-4.1), significantly higher than the number of late effects documented in medical notes (mean=0.7; CI: 0.5-0.9; t=-11.26, p<0.001). Thirty-five parents (77.8%, CI: 65.1-90.4) reported late effects for their children (mean=2.7; CI: 2.0-3.4), again higher than medical notes (mean=0.7; CI: 0.4-1.1; t=7.18, p<0.001). More than 30 specialties were involved in survivor care (mean=1.5; CI: 1.4-1.6; range 0-6). Those with more late effects saw more specialties (r=0.51, p<0.001).
  
  
  CONCLUSIONS
  We confirm the wide range of late effects experienced by survivors of child cancer, significantly greater than those recorded in medical notes, and requiring care from a range of specialties. Decisions about follow-up need to take account of patient-reported morbidity and concerns.
authors.affiliation: University of Sheffield Medical School, Beech Hill Road, Sheffield, UK.
authors.forename: Naomi
authors.initials: N
authors.lastname: Taylor
authors.forename: Kate
authors.initials: K
authors.lastname: Absolom
authors.forename: Gisela
authors.initials: G
authors.lastname: Michel
authors.forename: Tanya
authors.initials: T
authors.lastname: Urquhart
authors.forename: Mary
authors.initials: M
authors.lastname: Gerrard
authors.forename: Anna
authors.initials: A
authors.lastname: Jenkins
authors.forename: Vicki
authors.initials: V
authors.lastname: Lee
authors.forename: Ajay
authors.initials: A
authors.lastname: Vora
authors.forename: Christine
authors.initials: C
authors.lastname: Eiser
mesh_terms: D000293:Adolescent; D002648:Child; D016001:Confidence Intervals; D004739:England; D005260:Female; D006304:Health Status; D006801:Humans; D008134:Long-Term Care / Q000523:psychology; D008297:Male; D008499:Medical Records / Q000706:statistics & numerical data*; D009369:Neoplasms / Q000401:mortality / Q000523:psychology / Q000628:therapy*; D010290:Parents; D011788:Quality of Life / Q000523:psychology; D011795:Surveys and Questionnaires; D015996:Survival Rate; D017741:Survivors / Q000523:psychology