Chronic Traumatic Encephalopathy: Advocacy and Communicating with the Public

Over the past 40 years, advocacy groups have been instrumental in raising awareness for neurodegenerative diseases such as Alzheimer's disease. More recently, advocates have emerged to educate about sports concussions and chronic traumatic encephalopathy (CTE), including the Concussion Legacy Foundation (CLF). CTE is a neurodegenerative disease caused in part by repetitive head impacts (RHI). While the majority of CTE research has focused on studying former American football players, CTE has also been found in military personnel, victims of domestic violence, and contact sport athletes from high school to professional levels of play. Advocates' many goals include creating a culture of brain donation and modifying youth contact sports to decrease RHI. Here, we provide the first review of CTE advocacy, summarize the accomplishments of the CLF, and consider the connections between CTE advocacy, research, and legislation over the last decade.

FEAR AVOIDANCE BELIEFS RELATED TO PROLONGED RECOVERY FROM PEDIATRIC SPORTS CONCUSSIONS

Background: Individuals experiencing persistent pain or discomfort may develop avoidance behaviors and fear. Fear avoidance behaviors have been found to be predictive of chronic disability in adults with neck and low back pain. These behaviors were found to be predictive of symptom severity and disability in adults with mild traumatic brain injury. To our knowledge there has been no research examining this correlation in the pediatric population. Hypothesis/Purpose: To evaluate whether pediatric patients who had prolonged recovery from a concussion presented with greater fear avoidance behaviors, as measured by the Fear of Pain Questionnaire (FoPQ). Methods: Patients, ages 8 to 17 years old, diagnosed with a concussion and presenting within 2 weeks of the initial injury to sports medicine clinic were included in this study. Individuals were excluded if the mechanism of injury was a motor vehicle accident or assault. Participants who consented were administered a FoPQ at their initial visit. The FoPQ, which has been validated in the pediatric population, contains 24 questions rated on a 5 point Likert scale. Patient’s length of recovery, vestibular ocular motor screen (VOMS) score, and post-concussion symptoms scale score (PCSS) were also recorded. Results: From September 2018-May 2019, a total of 82 patients consented for the study. Out of the total number, 44 were female and 38 were male, with an average age of 14 years ( SD = 2.2). Patients who had prolonged recovery (> 28 days) had similar FoPQ scores ( M = 30.06, SD = 16.6) to those with normal recovery ( M = 31.35 SD = 19.1). No significant correlation was found between days to recovery and FoPQ score, r(67) = .05 , p = .668. Patients found to have a positive VOMS (79% of patients) at initial visit took longer to recover by 24.96 days, t(61.65) = -4.26, p < .001 when compared to those with a negative screen. A positive VOMS screen did not correlate with higher fear avoidance score t(21.71) = -.61, p = .550. PCSS severity positively correlated to days to recovery r(67) = .26, p = .037. Conclusion: Based on preliminary study results we found no correlation between fear avoidance beliefs and time to recover from sports concussions in a pediatric population. Our data did support previous findings that PCSS severity scores and positive VOMS were predictive of prolonged recovery from a concussion. We will continue to collect data in line with our a priori power analysis (n=200).