P3.175: The Impact of Structured Programming on Physical Activity for Adolescents with Sickle Cell Disease

Background: Many children living with a diagnosis of Sickle Cell Disease (SCD) experience daily pain. Mild to moderate levels of physical activity have been shown to improve these symptoms. Poorly managed pain may lead to school absences, social isolation and mental health illnesses. Literature suggests that incentivization programs help patients with chronic diseases in lifestyle modification and improved medication adherence.

Project Description: Our Pediatric Advanced Care Team created a structured program for pediatric patients aimed to promote physical activity for patients with SCD in 2023 and 2024. All participants were provided with an activity tracker. A digital platform was used to track activity and provide a space for community building among participants. Participants were grouped with two clinical teammates for support and accountability.

Participants were challenged to complete 20 minutes of mild to moderate physical activity each day over 30 days. A virtual meet-up was offered at the halfway mark, where participants engaged with medical disciplines. A variety of topics, including nutrition, physical therapy, and mindfulness were explored. The program concluded with a final celebration. Participants were awarded prizes according to their frequency of activity throughout the challenge. They also shared their experiences, celebrated each other’s wins, and met the other participants and families. Post-challenge surveys were distributed assessing the impact of the experience.

Discussion: We measured the overall physical activity of participants during the challenge. In 2023, 11 of 105 eligible participants logged roughly 2.4 million steps averaging 7,254 steps per day per participant. In 2024, 6 of 72 eligible participants totaled 2.5 million steps averaging 9,000 steps per day per participant. Surveys distributed to participants suggested a positive impact on activity levels. Participants also affirmed their continued use of the provided activity tracker after challenge completion. Low enrollment was a limitation to this study. We also acknowledge eligible participants with mild symptom burden may be more inclined to enroll.

Conclusion: Patients with SCD are a historically underserved group facing significant daily health challenges. Structured programming to promote physical activity offers opportunities for improved pain control, promotion of healthy living habits, and community building among adolescents with SCD. Further research is needed to better understand opportunities for increased recruitment and if physical activity is sustained over time.