Resources for researchers

Connecting with your cohort: Longitudinal cohort retention

The longer a study collects data, the richer its findings become. Keeping participants engaged throughout their lifetimes is critical, but challenging.

The Childhood Cancer Survivor Study (known as the Long-Term Follow-Up Study [LTFU] to its participants) is working with the Health Communication Core (HCC) to maximize the engagement of its nearly 25,000 participants.

Established in 1996, the LTFU Study is the largest cohort of childhood cancer survivors in the world, and one of the largest epidemiological investigations of late-effects outcomes. It is led by researchers at St. Jude Children’s Research Hospital and has been funded by NCI since 1994.

Listening and learning

HCC conducted phone interviews with LTFU Study participants across the country to better understand what promotes or discourages their engagement. Participants who consistently completed surveys discussed their pride in being part of the study and being able to help others. Among those who had skipped some surveys, having a busy life was a common barrier, while being reminded about their cancer experience when they received the surveys was an emotional challenge for others.

Based on what we learned, HCC developed a communication strategy with messaging and outreach tools that emphasized motivators and addressed barriers. We updated LTFU’s logo and redesigned its newsletter to highlight research results and study achievements, convey a sense of the cohort’s community, and continue sharing participants’ personal stories (see the latest newsletter)

Maximizing survey response

Mailing the latest follow-up survey began in August 2017. A “heads-up” postcard (see image to the left) mailed a few weeks in advance alerted participants that their survey was coming, and highlighted additional options for completing it based on their preference: online, on a smartphone, or over the telephone with trained LTFU staff.

Visually, the reformatted survey (both print and online) is clean, easy-to-read, attractive, and consistent with the study’s new visual approach.

Saying “thank you”

Affirming the value of participants’ contributions to research and expressing appreciation for their dedication to longitudinal research is a powerful retention tool.

After completing a survey, each LTFU Study participant receives a thank-you note from the principal investigator that confirms receipt of their survey, conveys appreciation of their commitment, affirms the value of their participation in the LTFU Study, and encourages them to learn more about the study’s achievements on its website:

Ongoing outreach

HCC’s communication strategy for the study provides a framework for ongoing messaging and content development for the newsletter,  website, and other communication channels.