456 - Community Health Worker Engagement with Adolescents and Young Adults with Sickle Cell Disease: Findings from the COMETS Study

Publication Number: 456.4281

Caren Steinway, Cohen Children's Medical Center, Queens, NY, United States; Jayanne Forrest, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, East Rockaway, NY, United States; Eelia Shaw, Donald and Barbara Zucker School of Medicine at Hofstra/Northwell, Flushing, NY, United States; Sophia Jan, Cohen Children's Medical Center of Northwell Health, New Hyde Park, NY, United States; Kim Smith-Whitley, Perelman School of Medicine at the University of Pennsylvania, Lafayette Hill, PA, United States; Symme W. Trachtenberg, Children's Hospital of Philadelphia, King of Prussia, PA, United States; Tanisha Belton, Childrens Hospital of Philadelphia, Philadelphia, PA, United States

Background: Trained Community Health Workers (CHWs) can build strong rapport with adolescent and young adult (AYA) patients, providing essential support to high-risk populations during transition from pediatric to adult health care. These relationships may facilitate improved health outcomes.

Objective: To describe interactions between AYA with sickle cell disease (SCD) and CHWs during a 6-month CHW intervention aimed at improving health-related quality of life.

Design/Methods: The COMETS study is a randomized clinical trial comparing the effectiveness of two self-management support interventions (CHWs and mobile health) versus enhanced usual care for improving the health-related quality of life of transitioning AYA with SCD. This analysis focuses on participants randomized to the CHW arm, which used the evidence-based IMPaCT model. Participants in this arm received weekly check-ins from CHWs and support in setting and achieving goals. Following each encounter, CHWs completed documentation summarizing the engagement. This documentation was deductively qualitatively coded and analyzed to identify key themes.

Results: The CHW arm included 120 participants. The median age was 18.66 years (range: 17.01-28.62), with 52% (n=62) identifying as female and 92% as Black or African American (n=110). Most participants (68%; n=83) had government-sponsored insurance, and 54% (n=65) had severe SCD, characterized by a history of overt stroke, acute chest syndrome, or 3 or more hospitalizations within the past 3 years.
CHWs successfully established contact with 95% (n=111) of participants within a median of 5 days (range:0-132 days) of assignment. Participants set an average of 2.5 goals (total= 297). By the end of the program, 70% of goals (n=208) were achieved, and 13% (n=16) were abandoned after 1 month.
Deductive coding of the CHW documentation revealed three primary themes (Table 2): transition readiness (48%), lifestyle improvements (21%), and hospitalizations or medical emergencies (19%). Table 1 provides descriptions and examples of the codes used in the analysis.

Conclusion(s): This CHW model demonstrates multifaceted support for AYA with SCD transitioning to adult care. Following CHW engagement, many participants reported improved self-management of their healthcare and lifestyle habits. Future studies should assess the value of the CHW intervention for pediatric patients with other chronic diseases. Furthermore, implementing and evaluating this model in other hospital settings could further elucidate its impact on health outcomes and mortality risk for AYA with SCD.

Table 1: Codes Used in CHW engagement documentation analysis


Table 2: Top three themes identified in the CHW engagement documentation