title: Cancer survivorship research: the challenge of recruiting adult long term cancer survivors from a cooperative clinical trials group.
abstract: BACKGROUND
  With the growing number of adult cancer survivors, there is increasing need for information that links potential late and long term effects with specific treatment regimens. Few adult cancer patients are treated on clinical trials; however, patients previously enrolled in these trials are an important source of information about treatment-related late effects.
  
  
  METHODS
  Focusing on colorectal cancer survivors, we used the database from five phase III randomized clinical trials from the National Surgical Adjuvant Breast & Bowel Project (NSABP) to recruit and enroll long term survivors in a study of late health outcomes and quality of life. We describe the challenges to recruitment of patients more than 5 -20 years after treatment.
  
  
  RESULTS
  Sixty-five NSABP treatment sites were invited to enroll patients in the study. Sixty participated with the potential to recruit 2,408 patients. We received registration forms on only 976 patients (41%) of whom 744 (76%) expressed interest in participating and 708 completed interviews (95% of those expressing interest; 29% of total potential sample). There were multiple barriers to recruitment (difficulty locating patients, lack of institutional commitment, lack of patient interest).
  
  
  CONCLUSIONS
  Patients treated on clinical trials are an important potential source for examining the late effects of cancer treatments. Retrospective recruitment has substantial limitations. In the future, mechanisms should be established for prospective long-term follow-up to identify and understand the frequency and type of late effects associated with cancer treatments.
  
  
  CONCLUSIONS
  As cancer patients are living longer, it will be important to learn from participants in clinical trials whether or not specific treatment regimens are associated with any serious late effects.
authors.affiliation: School of Public Health & David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, CA, USA. pganz@mednet.ucla.edu
authors.forename: Patricia A
authors.initials: PA
authors.lastname: Ganz
authors.forename: Stephanie R
authors.initials: SR
authors.lastname: Land
authors.forename: Cynthia
authors.initials: C
authors.lastname: Antonio
authors.forename: Ping
authors.initials: P
authors.lastname: Zheng
authors.forename: Greg
authors.initials: G
authors.lastname: Yothers
authors.forename: Laura
authors.initials: L
authors.lastname: Petersen
authors.forename: D Lawrence
authors.initials: DL
authors.lastname: Wickerham
authors.forename: N
authors.initials: N
authors.lastname: Wolmark
authors.forename: Clifford Y
authors.initials: CY
authors.lastname: Ko
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D000465:Algorithms; D002986:Clinical Trials as Topic; D003299:Cooperative Behavior; D016208:Databases, Factual; D005260:Female; D005500:Follow-Up Studies; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000401:mortality* / Q000534:rehabilitation* / Q000628:therapy; D018579:Patient Selection; D012107:Research Design; D015996:Survival Rate; D017741:Survivors / Q000706:statistics & numerical data