TY - JOUR
T1 - Examining the challenges of family recruitment to behavioral intervention trials
T2 - factors associated with participation and enrollment in a multi-state colonoscopy intervention trial.
AU - Simmons, Rebecca G.
AU - Lee, Yuan Chin Amy
AU - Stroup, Antoinette M.
AU - Edwards, Sandra L.
AU - Rogers, Amy
AU - Johnson, Christopher
AU - Wiggins, Charles L.
AU - Hill, Deirdre A.
AU - Cress, Rosemary D.
AU - Lowery, Jan
AU - Walters, Scott T.
AU - Jasperson, Kory
AU - Higginbotham, John C.
AU - Williams, Marc S.
AU - Burt, Randall W.
AU - Schwartz, Marc D.
AU - Kinney, Anita Y.
N1 - Funding Information:
Family CARE was funded by the National Cancer Institute (1R01CA125194-03; Kinney, PI) and the Huntsman Cancer Foundation. Family CARE was also supported by the Shared Resources (P30 CA042014) at Huntsman Cancer Institute (biostatisticians, genetic counselors, research informatics, TRAC, and the Utah Population Database [UPDB]); the Utah Cancer Registry, which is funded by Contract No. HHSN261201000026C from the National Cancer Institute’s SEER Program with additional support from the Utah State Department of Health and the University of Utah; the California Department of Public Health as part of the statewide cancer reporting program mandated by California Health and Safety Code Section 103885, the National Cancer Institute’s Surveillance, Epidemiology and End Results Program under contract N01PC-2010-00034C awarded to the Northern California Cancer Center, contract N01-PC-35139 awarded to the University of Southern California, and contract N01-PC-54404 awarded to the Public Health Institute, and the Centers for Disease Control and Prevention’s National Program of Cancer Registries, under agreement U58CCU000807-05 awarded to the Public Health Institute; the Colorado Central Cancer Registry program in the Colorado Department of Public Health and Environment funded by the National Program of Cancer Registries of the Centers for Disease Control and Prevention; the Cancer Data Registry of Idaho supported in part by the National Program of Cancer Registries of the Centers for Disease Control and Prevention; the New Mexico Tumor Registry which is funded by National Cancer Institute Contract No. HHSN261201000033C; the Rocky Mountain Cancer Genetics Network (HHSN261200744000C); the Huntsman Cancer Registry; and the Intermountain Healthcare Oncology Clinical Program and Intermountain Clinical Genetics Institute. This content is solely the responsibility of the authors and does not necessarily reflect the opinions or views of the funding and supporting agencies.
PY - 2013
Y1 - 2013
N2 - 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. 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. 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. 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. Family Colorectal Cancer Awareness and Risk Education Project NCT01274143.
AB - 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. 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. 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. 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. Family Colorectal Cancer Awareness and Risk Education Project NCT01274143.
UR - http://www.scopus.com/inward/record.url?scp=84891716918&partnerID=8YFLogxK
U2 - 10.1186/1745-6215-14-116
DO - 10.1186/1745-6215-14-116
M3 - Article
C2 - 23782890
AN - SCOPUS:84891716918
SN - 1745-6215
VL - 14
JO - Trials
JF - Trials
M1 - 116
ER -