Open Access Research

Examining the challenges of family recruitment to behavioral intervention trials: factors associated with participation and enrollment in a multi-state colonoscopy intervention trial

Rebecca G Simmons1*, Yuan-Chin Amy Lee2, Antoinette M Stroup34, Sandra L Edwards1, Amy Rogers1, Christopher Johnson5, Charles L Wiggins6, Deirdre A Hill7, Rosemary D Cress8, Jan Lowery9, Scott T Walters10, Kory Jasperson1, John C Higginbotham11, Marc S Williams12, Randall W Burt14, Marc D Schwartz1314 and Anita Y Kinney14

Author Affiliations

1 Huntsman Cancer Institute, 2000 Circle of Hope, Salt Lake City, UT, 84112, USA

2 Department of Family and Preventive Medicine, University of Utah, 375 Chipeta Way, Suite A, Salt Lake City, UT, 84108, USA

3 Utah Cancer Registry, 650 Komas Drive, Suite 106B, Salt Lake City, UT, 84108, USA

4 Department of Internal Medicine, University of Utah, 30 N 1900 E, Salt Lake City, UT, 84132, USA

5 Cancer Data Registry of Idaho, 615 N. 7th Street, PO Box 1278, Boise, ID, 83701, USA

6 New Mexico Tumor Registry, University of New Mexico Cancer Center, MSC 11 6020, 1 University of New Mexico, Albuquerque, NM, 87131, USA

7 Department of Internal Medicine, Division of Epidemiology and Biostatistics and University of New Mexico Cancer Research and Treatment Center, University of New Mexico School of Medicine, MSC 10 5550, 1 University of New Mexico, Albuquerque, NM, 87131, USA

8 California Cancer Registry, 1825 Bell Street, Suite 102, Sacramento, CA, 95825, USA

9 University of Colorado Cancer Center, 13001 E. 17th St., MS F-538, Aurora, CO, 80045, USA

10 University of North Texas Health Science Center, 3500 Camp Bowie Blvd, EAD 709, Fort Worth, TX, 76107, USA

11 Institute for Rural Health, University of Alabama, Tuscaloosa Campus, 850 5th Avenue East, Tuscaloosa, AL, 35401, USA

12 Genomic Medicine Institute, Geisinger Research, Weis Center for Research, 100 N Academy Ave. Mail Stop 26-20, Danville, PA, 17822, USA

13 Georgetown University, Harris Building, 3300 Whitehaven St., N.W., Washington DC, 20007, USA

14 Lombardi Comprehensive Cancer Center, 3970 Reservoir Rd NW E501, Washington, DC, 20007, USA

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Trials 2013, 14:116  doi:10.1186/1745-6215-14-116

Published: 30 April 2013

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.

Trial registration

Family Colorectal Cancer Awareness and Risk Education Project NCT01274143.

Keywords:
Cancer; Colorectal; Patient selection; Recruitment