Participation in pediatric epidemiologic research: the SEARCH for Diabetes in Youth Study experience

Contemp Clin Trials. 2008 Nov;29(6):829-36. doi: 10.1016/j.cct.2008.05.008. Epub 2008 Jun 5.


Background: We evaluated the association of demographic and clinical characteristics with participation in an epidemiologic study of diabetes mellitus among youth.

Methods: SEARCH for Diabetes in Youth is a multicenter study of physician-diagnosed diabetes in youth under the age of 20 comprising a surveillance and a cohort component. At each center, we enumerated all prevalent cases of diabetes in 2001 (n=6266) and all incident cases between 2002 and 2004 (n=3668). After confirmation of eligibility and validation, we invited each case to complete a survey and participate in a study visit. Here we evaluate how age, sex, race, and diabetes type are associated with participation in the survey and study visit.

Results: Among prevalent cases, participation in the survey was 68% and 41% in the study visit. Among 2002 to 2004 incident cases, participation varied for the survey (76%, 81%, and 82%) and study visit (52%, 60%, and 60%). In multivariate logistic regression analyses among all incident cases, older age was associated with a lower odds of participation in the study visit (15-17 vs. <10 years: OR 0.5, 95% CI 0.4-0.7; 18-19 vs. <10 years: OR 0.3, 95% CI 0.2-0.5), as was having type 2 diabetes vs. type 1 diabetes (OR 0.5, 95% CI 0.4-0.7) and being of African American race vs. non-Hispanic White (OR 0.6, 95% CI 0.4-0.8). Results were very similar among prevalent cases.

Conclusions: Elucidating the relationship between individual characteristics and participation is essential for evaluating nonresponse bias, correcting for it, and for planning and implementing recruitment strategies.

Publication types

  • Multicenter Study
  • Research Support, N.I.H., Extramural
  • Research Support, U.S. Gov't, P.H.S.

MeSH terms

  • Adolescent
  • Adult
  • Bias
  • Child
  • Confidence Intervals
  • Diabetes Mellitus / epidemiology*
  • Epidemiologic Methods
  • Female
  • Health Care Surveys
  • Humans
  • Logistic Models
  • Male
  • Multivariate Analysis
  • Odds Ratio
  • Patient Participation / statistics & numerical data*
  • Pediatrics*
  • Population Surveillance
  • Surveys and Questionnaires
  • United States / epidemiology
  • Young Adult