(30) Factors contributing to successful retention of Cystic Fibrosis patients in a 3-month daily symptom tracking study

Thursday, November 3, 2022

12:00 PM – 12:40 PM ET

Presenting Author(s)

Molly Ruben, MPH (she/her/hers)

Research Coordinator
University of Washington
SEATTLE, Washington, United States

Co-Author(s)

Emily M. Godfrey, MD, MPH (she/her/hers)

Associate Professor
University of Washington
Seattle, Washington, United States
BR

Brittany Rattiliff

Research Scientist
University of Washington
Seattle, Washington, United States
GB

Georgia Brown, MLA

Patient Partner
Patient Centered Outcomes Research Institute, United States
KC

Katherine Caldwell, PhD

Clinical Assistant Professor
University of Illinois at Chicago
Chicago, Illinois, United States
SM

Sheila K. Mody, MD MPH

Associate Professor
University of California, San Diego
San Diego, California, United States
Elinor Langfelder-Schwind, MS (she/her/hers)

Sr. Genetic Counselor
Lenox Hill Hospital/Northwell Health
New York, New York, United States
PW

Patricia Walker, MD

Co-Director, Cystic Fibrosis Center
Mount Sinai Beth Israel, United States
Sandra Sufian, PhD, MPH

Professor
University of Illinois Chicago, United States

Background: Retention of research participants is critical for studies to provide useful results. Failure to meet retention goals can compromise a study’s statistical power and what conclusions can be drawn. Recommendations for optimizing retention include engaging stakeholders, mitigating potential barriers, and minimizing burdens while returning value for participants [1]. We applied these strategies to a study investigating the relationship between Cystic Fibrosis (CF) symptoms and the menstrual cycle using a smartphone app to record daily symptoms and online monthly surveys.

Methods: We developed study aims based on research priorities identified by CF patients as part of the Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC) [2] and included a patient-partner on our research team. Study participation involved daily tracking of CF and menstrual symptoms and four monthly surveys.

To standardize tracking, we customized a “period-tracking” smartphone app to list all symptoms of interest. Participants had access to their own app data throughout the study. We built our online database to fully automate sending email reminders and monthly survey links. We recruited 74 women ages 18-45 with CF and regular menstrual cycles from June 1 – October 30, 2021. Participants were able to enroll and start tracking on any day of their menstrual cycle. Prior to tracking, participants attended a one-on-one, 45-minute video conference orientation. Research staff walked participants through downloading the app, recording symptoms, setting phone reminders for daily tracking, and next steps. Participants received an electronic gift card after each online survey.

Results: Of the 74 participants who completed a virtual orientation, 99% (n=73) completed the baseline survey, which was the next step in study participation. Completion rates for the 4 monthly surveys were 97% (n=72), 95% (n=70), 89% (n=66), and 89% (n=66) respectively. One participant was withdrawn while completing the month 4 survey, so the overall study completion rate was 88% (n=65). Of the 9 participants who did not complete the study, 6 were withdrawn because they failed to complete the online surveys. Three participants were withdrawn due to other study criteria.

Conclusions: Several factors contributed to the successful retention of research participants in this study. We designed the study based on research priorities identified by the patient community of interest. We minimized barriers to participation by allowing participants to enroll during any phase of their cycle and by selecting mobile technology that required minimal time and effort for tracking. Showing participants how to track in the app mitigated potential technology challenges. Participants could see their symptom data in the app and were compensated every few weeks. Daily reminders and automated survey invitation emails streamlined study efforts for participants and research staff.

Acknowledgements: This work was supported by the Cystic Fibrosis Foundation [GODFRE20A0] and conducted in partnership with Prima-Temp, Inc. The authors are grateful to our research participants, community partners, CFF Community Voice, and CFReSHC for their support and assistance.

References: [1] Cook SK, Kennedy N, Boone L, Drury B, Rodweller C, Stroud M, et al. What we wish every investigator knew: Top 4 recruitment and retention recommendations from the Recruitment Innovation Center. Journal of Clinical and Translational Science. Cambridge University Press; 2022;6(1):e31.

[2] www.cfreshc.org