Dataset Information

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

ABSTRACT: 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.

SUBMITTER: Simmons RG

PROVIDER: S-EPMC3691526 | biostudies-literature | 2013 Apr

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

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

Simmons Rebecca G RG Lee Yuan-Chin Amy YC Stroup Antoinette M AM Edwards Sandra L SL Rogers Amy A Johnson Christopher C Wiggins Charles L CL Hill Deirdre A DA Cress Rosemary D RD Lowery Jan J Walters Scott T ST Jasperson Kory K Higginbotham John C JC Williams Marc S MS Burt Randall W RW Schwartz Marc D MD Kinney Anita Y AY

Trials 20130430

<h4>Background</h4>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 st ...[more]

PMID: 23782890

Similar Datasets

Project description:ObjectiveTo assess factors associated with trial participation in the context of a low-risk intervention intended to reduce adverse drug events in recently hospitalized older adults.DesignMixed methods: analysis of data collected during enrollment efforts and focus groups.SettingA large, multispecialty group practice.ParticipantsIndividuals 50 years and older, recently discharged from the hospital and prescribed at least one high-risk medication, were eligible for the trial. Enrollees, decliners, and their caregivers were eligible to participate in focus groups.MeasurementsReasons for declining to participate during the initial invitation as well as reasons for not providing consent were recorded. Focus groups were conducted with eligible individuals to explore reasons for enrolling or declining. We conducted multivariable logistic regression to compare characteristics (including sex, age, healthcare proxy, number and type of medications, visiting nurse services, reason for admission, and length of hospital stay) of those who enrolled with those who did not enroll.ResultsOf 3,606 individuals determined eligible, 3,147 (87%) declined, 98 (3%) verbally consented to participate but did not complete written consent, and 361 (10%) provided written consent and were considered enrolled. Individuals 80 year and older (odds ratio (OR) = 0.44; 95% confidence interval (CI) = 0.30-0.65) and those with visiting nurse services (OR = 0.64; 95% CI = 0.48-0.85) were least likely to enroll. Among those who provided a reason for declining (2,473), the most common was the belief they did not need additional medication assistance (18%). Another 332 (11%) declined because they were receiving visiting nurse services.ConclusionRecruiting older adults recently discharged from the hospital to participate in trials of low-risk, system-level interventions is challenging and may underenroll the oldest individuals and those potentially at the highest risk for adverse events, limiting generalizability of study findings. Alternative study designs may be more effective than individually randomized trials in assessing low-risk, system-level interventions.

Dataset Information

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

Publications

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

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets