title: Determinants of subject visit participation in a prospective cohort study of HTLV infection.
abstract: BACKGROUND
  Understanding participation in a prospective study is crucial to maintaining and improving retention rates. In 1990-92, following attempted blood donation at five blood centers, we enrolled 155 HTLV-I, 387 HTLV-II and 799 HTLV seronegative persons in a long-term prospective cohort.
  
  
  METHODS
  Health questionnaires and physical exams were administered at enrollment and 2-year intervals through 2004. To examine factors influencing attendance at study visits of the cohort participants we calculated odds ratios (ORs) with generalized estimated equations (GEE) to analyze fixed and time-varying predictors of study visit participation.
  
  
  RESULTS
  There were significant independent associations between better visit attendance and female gender (OR = 1.31), graduate education (OR = 1.86) and income > $75,000 (OR = 2.68). Participants at two centers (OR = 0.47, 0.67) and of Black race/ethnicity (OR = 0.61) were less likely to continue. Higher subject reimbursement for interview was associated with better visit attendance (OR = 1.84 for $25 vs. $10). None of the health related variables (HTLV status, perceived health status and referral to specialty diagnostic exam for potential adverse health outcomes) significantly affected participation after controlling for demographic variables.
  
  
  CONCLUSIONS
  Increasing and maintaining participation by minority and lower socioeconomic status participants is an ongoing challenge in the study of chronic disease outcomes. Future studies should include methods to evaluate attrition and retention, in addition to primary study outcomes, including qualitative analysis of reasons for participation or withdrawal.
authors.affiliation: Department of Laboratory Medicine, University of California, San Francisco, California, USA. devitad@labmed2.ucsf.edu
authors.forename: Deborah A
authors.initials: DA
authors.lastname: DeVita
authors.forename: Mary C
authors.initials: MC
authors.lastname: White
authors.forename: Xin
authors.initials: X
authors.lastname: Zhao
authors.forename: Zhanna
authors.initials: Z
authors.lastname: Kaidarova
authors.forename: Edward L
authors.initials: EL
authors.lastname: Murphy
mesh_terms: D000293:Adolescent; D000328:Adult; D015331:Cohort Studies; D005260:Female; D015490:HTLV-I Infections; D015491:HTLV-II Infections; D006304:Health Status; D006801:Humans; D008297:Male; D008875:Middle Aged; D015999:Multivariate Analysis; D016017:Odds Ratio; D010342:Patient Acceptance of Health Care / Q000706:statistics & numerical data*; D011446:Prospective Studies; D035842:Research Subjects / Q000523:psychology; D012737:Sex Factors; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires; D014481:United States; D055815:Young Adult