title: Examining the challenges of family recruitment to behavioral intervention trials: factors associated with participation and enrollment in a multi-state colonoscopy intervention trial.
abstract: BACKGROUND
  Colonoscopy is one of the most effective methods of cancer prevention and detection, particularly for individuals with familial risk. Recruitment of family members to behavioral intervention trials remains uniquely challenging, owing to the intensive process required to identify and contact them. Recruiting at-risk family members involves contacting the original cancer cases and asking them to provide information about their at-risk relatives, who must then be contacted for study enrollment. Though this recruitment strategy is common in family trials, few studies have compared influences of patient and relative participation to nonparticipation. Furthermore, although use of cancer registries to identify initial cases has increased, to our knowledge no study has examined the relationship between registries and family recruitment outcomes.
  
  
  METHODS
  This study assessed predictors of case participation and relative enrollment in a recruitment process that utilized state cancer registries. Participation characteristics were analyzed with separate multivariable logistic regressions in three stages: (1) cancer registry-contacted colorectal cancer (CRC) cases who agreed to study contact; (2) study-contacted CRC cases who provided at-risk relative information; and (3) at-risk relatives contacted for intervention participation.
  
  
  RESULTS
  Cancer registry source was predictive of participation for both CRC cases and relatives, though relative associations (odds ratios) varied across registries. Cases were less likely to participate if they were Hispanic or nonwhite, and were more likely to participate if they were female or younger than 50 at cancer diagnosis. At-risk relatives were more likely to participate if they were from Utah, if another family member was also participating in the study, or if they had previously had a colonoscopy. The number of eligible cases who had to be contacted to enroll one eligible relative varied widely by registry, from 7 to 81.
  
  
  CONCLUSIONS
  Family recruitment utilizing cancer registry-identified cancer cases is feasible, but highly dependent on both the strategies and protocols of those who are recruiting and on participant characteristics such as sex, race, or geography. Devising comprehensive recruitment protocols that specifically target those less likely to enroll may help future research meet recruitment goals.
  
  
  BACKGROUND
  Family Colorectal Cancer Awareness and Risk Education Project NCT01274143.
authors.affiliation: Huntsman Cancer Institute, 2000 Circle of Hope, Salt Lake City, UT 84112, USA. rebecca.simmons@hci.utah.edu
authors.forename: Rebecca G
authors.initials: RG
authors.lastname: Simmons
authors.forename: Yuan-Chin Amy
authors.initials: YC
authors.lastname: Lee
authors.forename: Antoinette M
authors.initials: AM
authors.lastname: Stroup
authors.forename: Sandra L
authors.initials: SL
authors.lastname: Edwards
authors.forename: Amy
authors.initials: A
authors.lastname: Rogers
authors.forename: Christopher
authors.initials: C
authors.lastname: Johnson
authors.forename: Charles L
authors.initials: CL
authors.lastname: Wiggins
authors.forename: Deirdre A
authors.initials: DA
authors.lastname: Hill
authors.forename: Rosemary D
authors.initials: RD
authors.lastname: Cress
authors.forename: Jan
authors.initials: J
authors.lastname: Lowery
authors.forename: Scott T
authors.initials: ST
authors.lastname: Walters
authors.forename: Kory
authors.initials: K
authors.lastname: Jasperson
authors.forename: John C
authors.initials: JC
authors.lastname: Higginbotham
authors.forename: Marc S
authors.initials: MS
authors.lastname: Williams
authors.forename: Randall W
authors.initials: RW
authors.lastname: Burt
authors.forename: Marc D
authors.initials: MD
authors.lastname: Schwartz
authors.forename: Anita Y
authors.initials: AY
authors.lastname: Kinney
mesh_terms: D000367:Age Factors; D001364:Awareness; D016009:Chi-Square Distribution; D003110:Colonic Neoplasms / Q000175:diagnosis* / Q000191:economics / Q000208:ethnology / Q000235:genetics / Q000517:prevention & control / Q000523:psychology; D003113:Colonoscopy / Q000191:economics / Q000523:psychology*; D003365:Costs and Cost Analysis; D005190:Family / Q000523:psychology*; D005240:Feasibility Studies; D005260:Female; D015438:Health Behavior / Q000208:ethnology; D017048:Health Care Costs; D007722:Health Knowledge, Attitudes, Practice / Q000208:ethnology; D006630:Hispanic or Latino; D006801:Humans; D016015:Logistic Models; D008297:Male; D008403:Mass Screening / Q000191:economics / Q000379:methods / Q000523:psychology*; D008875:Middle Aged; D015999:Multivariate Analysis; D016017:Odds Ratio; D010353:Patient Education as Topic; D018579:Patient Selection; D011237:Predictive Value of Tests; D011379:Prognosis; D012042:Registries; D012111:Residence Characteristics; D018570:Risk Assessment; D012307:Risk Factors; D012737:Sex Factors; D014481:United States / Q000453:epidemiology