title: Understanding the functional late effects and informational needs of adult survivors of childhood cancer.
abstract: OBJECTIVE
  To report functional (physical and cognitive) late effects, experiences, and information needs of adult survivors of childhood cancer.
  
  
  METHODS
  Descriptive, mixed methods survey.
  
  
  METHODS
  Two pediatric oncology programs in the Midwest.
  
  
  METHODS
  Convenience sample of 272 young adult survivors.
  
  
  METHODS
  Voluntary survey completion by young adult survivors regarding late effects, experiences, and educational needs to develop appropriate comprehensive care programs for care provision before, during, and after transition to adult care. Survey domains were identified from existing survivorship literature and focused on all aspects of survivorship; however, this article focuses on results specific to the functional domain.
  
  
  METHODS
  Functional late effects, experiences, information needs, age, gender, and treatment intensity of young adult survivors of childhood cancer.
  
  
  RESULTS
  Response rate was 48%. Functional late effects, perceptions, and information needs all correlated with intensity of treatment (those survivors most heavily treated experienced the most symptoms). Survivors wanted more information about late effects and how to deal with them. Women wanted more information about fertility-related topics, and participants who received more intense treatment generally wanted more information. Brain tumor survivors perceived greater cognitive difficulties, cognitive late effects, fatigue, and financial difficulties.
  
  
  CONCLUSIONS
  Survivors experience myriad physical late effects and require ongoing access to information as needs change over time.
  
  
  CONCLUSIONS
  Identifying new and innovative ways to reach survivors and better meet needs is important for care, research, and program development.
  
  
  CONCLUSIONS
  The findings of the research underscore the importance of continuous learning opportunities for adult survivors of childhood cancer. The findings also highlight the need for healthcare teams to better understand the current and long-term needs of this population. In addition to traditional communication approaches, technologies such as social media and telemedicine can provide innovative ways to deliver patient-centered care.
authors.affiliation: Survive and Thrive Survivorship Program, Children's Mercy Hospitals and Clinics, Kansas City, MO, USA. wsmcclellan@cmh.edu
authors.forename: Wendy
authors.initials: W
authors.lastname: McClellan
authors.forename: Jennifer R
authors.initials: JR
authors.lastname: Klemp
authors.forename: Hope
authors.initials: H
authors.lastname: Krebill
authors.forename: Robin
authors.initials: R
authors.lastname: Ryan
authors.forename: Eve-Lynn
authors.initials: EL
authors.lastname: Nelson
authors.forename: Jyoti
authors.initials: J
authors.lastname: Panicker
authors.forename: Mukta
authors.initials: M
authors.lastname: Sharma
authors.forename: Kristin
authors.initials: K
authors.lastname: Stegenga
mesh_terms: D000328:Adult; D002648:Child; D003625:Data Collection; D005260:Female; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009369:Neoplasms / Q000451:nursing* / Q000523:psychology*; D009859:Oncology Nursing / Q000379:methods*; D010353:Patient Education as Topic; D017741:Survivors / Q000523:psychology*