title: Knowledge and risk perception of late effects among childhood cancer survivors and parents before and after visiting a childhood cancer survivor clinic.
abstract: Survivors of childhood cancer are at risk for a variety of treatment-related late effects and require lifelong individualized surveillance for early detection of late effects. This study assessed knowledge and perceptions of late effects risk before and after a survivor clinic visit. Young adult survivors (≥ 16 years) and parents of child survivors (< 16 years) were recruited prior to initial visit to a cancer survivor program. Sixty-five participants completed a baseline survey and 50 completed both a baseline and follow-up survey. Participants were found to have a low perceived likelihood of developing a late effect of cancer therapy and many incorrect perceptions of risk for individual late effects. Low knowledge before clinic (odds ratio = 9.6; 95% confidence interval, 1.7-92.8; P = .02) and low perceived likelihood of developing a late effect (odds ratio = 18.7; 95% confidence interval, 2.7-242.3; P = .01) were found to predict low knowledge of late effect risk at follow-up. This suggests that perceived likelihood of developing a late effect is an important factor in the individuals' ability to learn about their risk and should be addressed before initiation of education.
authors.affiliation: Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, GA, USA Brooke.Cherven@choa.org.
authors.forename: Brooke
authors.initials: B
authors.lastname: Cherven
authors.affiliation: Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, GA, USA Emory University, Atlanta, GA, USA.
authors.forename: Ann
authors.initials: A
authors.lastname: Mertens
authors.affiliation: Emory University, Atlanta, GA, USA.
authors.forename: Lillian R
authors.initials: LR
authors.lastname: Meacham
authors.affiliation: Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, GA, USA.
authors.forename: Rebecca
authors.initials: R
authors.lastname: Williamson
authors.affiliation: Emory University, Atlanta, GA, USA.
authors.forename: Cathy
authors.initials: C
authors.lastname: Boring
authors.affiliation: Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, GA, USA Emory University, Atlanta, GA, USA.
authors.forename: Karen
authors.initials: K
authors.lastname: Wasilewski-Masker
mesh_terms: D000293:Adolescent; D000328:Adult; D000553:Ambulatory Care / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D005260:Female; D005845:Georgia; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000628:therapy*; D016017:Odds Ratio; D010290:Parents / Q000523:psychology*; D012307:Risk Factors; D011795:Surveys and Questionnaires; D017741:Survivors / Q000523:psychology*; D055815:Young Adult
keywords: childhood cancer survivor; late effects of cancer treatment; risk perception; survivorship