Online longitudinal monitoring of brain health in former contact sport athletes: A study of acceptability and ethicality

Retrospective studies reveal that retired professional football players are at an increased risk of dementia. Prospective, longitudinal evidence in athletes diverse in sex, playing level, age and sport are now needed to understand the link between contact sport and dementia. The SCORES (Screening Cognitive Outcomes after Repetitive head impact Exposure in Sport) project investigates brain health online of former contact and non-contact sport athletes as they age. Longitudinal study success is dependent on recruitment and retention. Both are influenced by perceived acceptability of participation. The SCORES project also offers regular feedback on assessment performance to participants, which raises ethical challenges. This study was designed to explore acceptability of the SCORES project to improve recruitment, retention and ensure ethicality amongst participants. Eight participants were purposively sampled and interviewed based on Sekhon's theoretical framework for assessing acceptability. Responses were analysed deductively against this framework. Main findings were that promoting altruistic and personal benefits of participation could aid recruitment. Conversely, computer literacy and the possibility of discovering a decline in their brain health was a potential barrier. Participants identified clarity of instructions, regular non-intrusive researcher contact, low assessment burden, emphasis on participation as voluntary and the promotion of a community as avenues towards improving retention. They identified assessment frustration and challenging assessments as possible reasons for attrition. Participants viewed feedback as both necessary and important and made suggestions for ensuring ethicality. Findings from this study demonstrate how longitudinal online studies of athletes can be improved to aid recruitment, retention and ethicality. This study assessed the acceptability of an existing online longitudinal study protocol that monitors brain health in former athletes and provides feedback on performance in cognitive assessments. Online study environments reduce some of the burden associated with participation in online studies and enable recruitment of diverse athlete populations. Assessing acceptability for participants in online longitudinal health studies in an athlete population is important for improving protocols and efficiency of time and resources. This investigation demonstrates that participants find the online environment to be acceptable and makes suggestions for improving recruitment and retention. The inclusion of a feedback process is important for recruitment and retention, and participants outline a procedure that would be ethical and meaningful for them. Findings from this study can be used to inform design, improve recruitment and retention and integrate ethical feedback procedures into online longitudinal studies of athletes.