title: Knowledge of diagnosis, treatment history, and risk of late effects among childhood cancer survivors and parents: The impact of a survivorship clinic.
abstract: BACKGROUND
  Childhood cancer survivors are at risk for treatment-related adverse health outcomes, known as late effects. Through matched and longitudinal cohorts, we assessed the impact of survivorship care on patient and parent knowledge of treatment history and associated health risks.
  
  
  METHODS
  Childhood cancer survivors were recruited from a single-institution survivorship clinic and matched with survivors receiving routine follow-up care (controls) on diagnosis, age, and time off therapy. One hundred seventy-four participants completed telephone interviews assessing knowledge of diagnosis, treatment history, and risk of late effects. Additionally, 48 new survivorship patients were followed longitudinally with serial interviews for 18 months.
  
  
  RESULTS
  In the case-control study, survivorship participants were more likely than controls to correctly report their diagnosis (98% vs. 90%, P = 0.039) and indicate a previous discussion of risk of late effects (99% vs. 62%, P<0.0001). Compared to controls, survivorship participants were 13% more sensitive reporting chemotherapeutics (95%CI 2.8-23.7%, P = 0.013) and 12% more sensitive reporting late effect risk (95%CI 7.3-16.6%, P<0.0001). In the longitudinal cohort, participants were 7% more sensitive reporting chemotherapeutics (95%CI 5.4-10.8%, P < 0.001) and 9% more sensitive reporting late effect risk (95%CI 5.6-23.8%, P<0.001) at 3 months compared to baseline. In regression analysis, baseline knowledge correlated with subsequent interview performance, and time since survivorship visit correlated with decreased knowledge of late effects, but not diagnosis or treatment history.
  
  
  CONCLUSIONS
  Survivorship care was associated with increased knowledge of diagnosis, treatment history, and risk of late effects in both cohorts. Knowledge of late effects decreases with time, suggesting the need for additional educational strategies.
authors.affiliation: Department of Pediatrics, Vanderbilt University School of Medicine, Nashville, Tennessee.
authors.forename: Robert B
authors.initials: RB
authors.lastname: Lindell
authors.affiliation: Department of Pediatrics, Vanderbilt University School of Medicine, Nashville, Tennessee.
authors.forename: Shannon J
authors.initials: SJ
authors.lastname: Koh
authors.affiliation: Department of Biostatistics, Vanderbilt University School of Medicine, Nashville, Tennessee.
authors.forename: JoAnn M
authors.initials: JM
authors.lastname: Alvarez
authors.affiliation: Department of Biostatistics, Vanderbilt University School of Medicine, Nashville, Tennessee.
authors.forename: Tatsuki
authors.initials: T
authors.lastname: Koyama
authors.affiliation: Department of Pediatrics, Vanderbilt University School of Medicine, Nashville, Tennessee.|Vanderbilt-Ingram Cancer Center, Nashville, Tennessee.
authors.forename: Adam J
authors.initials: AJ
authors.lastname: Esbenshade
authors.affiliation: Department of Pediatrics, Vanderbilt University School of Medicine, Nashville, Tennessee.
authors.forename: Jill H
authors.initials: JH
authors.lastname: Simmons
authors.affiliation: Department of Pediatrics, Vanderbilt University School of Medicine, Nashville, Tennessee.|Vanderbilt-Ingram Cancer Center, Nashville, Tennessee.
authors.forename: Debra L
authors.initials: DL
authors.lastname: Friedman
mesh_terms: D000328:Adult; D000970:Antineoplastic Agents / Q000009:adverse effects* / Q000627:therapeutic use*; D016022:Case-Control Studies; D002648:Child; D003625:Data Collection; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006301:Health Services Needs and Demand; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000188:drug therapy*; D010290:Parents; D012306:Risk; D012657:Self-Help Groups; D017741:Survivors
chemical_list: D000970:Antineoplastic Agents
keywords: childhood cancer survivors; guidelines; late effects; survivorship clinic