Abstracts

Rationale: People with epilepsy are advised not to engage in sports [van den Bogard, et. al. Dtsch Arztebl Int, 2020]. Swimming in particular was reported to be associated with high mortality due to submersion [Wirrell, E.C. Epilepsia, 2006]. Mortality for accidental drowning in adults with epilepsy is reported to be higher than for accidental mechanical suffocation [Sheth,et. al., Neurology, 2004]. However, risk of sustaining a seizure while swimming is relatively low [Buck, D., et al, Epilepsia,1997] and in tightly supervised setting morbidity and mortality related to swimming can be eliminated, creating conducive environment to teach people with epilepsy how to swim and survive in the water. In partnering with Community Based Organization (CBO), Epilepsy Alliance of West Central NY, part of Empowering People’s Independence (EPI), we developed a pilot program to teach children with epilepsy swimming skills, and as part of clinical trial to assess their mood and social interaction during this program and to evaluate importance of EPI for their parents.


Methods: A six-week Learn-to-Swim program was established in collaboration between EPI (MR, SK), UR epileptologist and a certified lifeguard (OS), and swim instructors (TJ, LS, LP). It took place at JCC of Greater Rochester in July and August of 2022. The investigator-initiated clinical trial was approved by University of Rochester IRB. Participants could enroll in Learn-to-Swim program without consenting to participate in the research study, however they all chose to enroll. Informed assent and consent were obtained from the participants and their parents. Prior to each swim session, participants’ parents completed age appropriate PROMIS scales for Pediatric Anxiety, Pediatric Depressive Symptoms, Parent Proxy Anxiety, Parent Proxy Depressive Symptoms, Parent Proxy Peer Relationship. Parents completed a survey on importance of CBO. Swimming sessions included dry-land instructions on water safety and 1-hour one on one swim training. Swimming ability was tracked.


Results: Three participants (ages 6, 7 (both non-swimmers), and 14 years (swimmer with basic swim styles); 66% females) were recruited. Six one-hour long supervised swim sessions took place between 07/09/2022 and 08/26/2022. None of the participants experienced a seizure in the pool. At the end of the training, one non-swimmer was able to swim 4 body lengths, one non-swimmer was able to swim with a flotation device and one swimmer was able to swim 25 meters in butterfly style. The mood assessments did not show significant change. All parents indicated that CBO is either somewhat important (33%) or very important (67%) to them.


Conclusions: We demonstrated that in collaboration between healthcare professionals, CBO and community volunteers, children with epilepsy can successfully and safely develop lifesaving skills, such as swimming. We also demonstrated the importance of CBO for the parents of children with epilepsy and the community.




Funding: None