Abstract

Return of Clinically Relevant Research Results: Participant Follow-Up in The Football Players Health Study - In-Person Assessments

Linda Pitler, RN, MS, Heather DiGregorio, Trevor Bates, Cheyenne Brown, Inana Dairi, Elizabeth Kane, Robyn Keske, MSW, MPH, Ann Connor, RN, MS, Rachel Grashow, MS, PhD, Alicia Whittington, PhD, Adam Tenforde, MD, Meagan M. Wasfy, MD, Marc G. Weisskopf, PhD, ScD, Ross Zafonte, DO, Aaron Baggish, MD Football Players Health Study at Harvard University, Harvard Medical School

APHA 2022 Annual Meeting and Expo

Background: The return of clinically-relevant results to research participants is an increasingly popular practice in clinical research studies. Presently, data defining the downstream (i.e. post-study) impact of this practice remain sparse.

Methodology: The Football Players Health Study “In-Person Assessments is designed to identify and quantify multi-system pathophysiology among former professional American Style Football players. Men (eligibility age = 24 to 60) undergo multi-modality cardiovascular, neurocognitive, endocrinologic, sleep, and chronic pain assessments over a 3-day study visit. At completion, each participant attends a structed exit visit with a study physician and nurse and receives a printed report detailing clinically actionable findings. The study nurse remains available to assist with post-visit provider follow-up. We sought to establish the most common clinically actionable findings and describe downstream impact in this cohort.

Results: Among 85 completed participants as of April 2022, clinically relevant findings included abnormal laboratory values, hypertension, abnormal sleep study, impaired left ventricular function, and structural brain lesions. Sixty-nine participants requested results be shared with their established provider or requested assistance with finding a new provider. In a follow-up survey completed by the first 35 participants, 34/35 (97%) reported learning something new about their health with 100% referring to their report after returning home and 94% sharing results with family members and/or providers.

Conclusion: Providing clinically-relevant results to research participants improves participant knowledge of personal health and facilitates subsequent clinical care. Future work is required to determine the impact of results return in the context of research on subsequent clinical outcomes.