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Retaining the cohort: GUTS grows up
A lot has changed since the Growing Up Today Study (GUTS) cohort was recruited. They were young children, ages 9-14, and their mothers were part of the world-famous, long-running Nurses’ Health Study. More than 30,000 children were enrolled in 1996 and in 2004.
Nearly 100 articles have published GUTS data on topics ranging from acne to weight gain. Now that participants are adults, their health outcomes can be compared with those of their mothers, so GUTS and NHS function as a kind of cross-generation “super study.”
But they’re not kids anymore—they’re between 18 and 34. Most have moved away from home. Their mothers are no longer in a position to make sure they complete questionnaires for a study they did not enroll themselves in.
Faced with concerns about retention, the study’s researchers at Brigham and Women’s Hospital and Harvard School of Public Health began working with the DF/HCC Health Communication Core to renew participants’ engagement with GUTS.
HCC began by asking GUTS participants what they liked about being in the study and what they didn’t like. Interviews with participants across the country provided valuable data about what motivated them to remain active in the study (benefitting others, seeing results), what turned them off (lengthy questionnaires), and common misperceptions (“I’m too old now.”)
In response to what we learned, the GUTS researchers created a shorter survey that can be completed quickly and conveniently online.
To further engage participants, HCC developed a dynamic new website www.gutsweb.org that provides easy access to what mattered most to them—the latest research, a map of where they live, a sense of how much data has been collected (over the years, the cohort has grown 153,675 inches--ten times the height of the Empire State Building), easy access to their surveys, a peek into their own pasts, and a link to the study’s Facebook page.
The host of exciting changes was announced in the annual GUTS newsletter. GUTS moms received a special update thanking them for their support and asking for their help confirming participants’ contact information.
GUTS’ ongoing retention strategy “gives back” to participants with updates from investigators, Youtube videos about the research, and an energized Facebook presence.