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

Background: Adolescents and young adults (AYA) with Sickle Cell Disease (SCD) face increased hospitalizations and mortality risk due to challenges in transitioning to adult care (T.D. Belton et al 24). Trained Community Health Workers (CHWs) can build strong rapport with AYA patients, providing essential support to high-risk populations which facilitates goal setting that leads to improved health outcomes. This study examines the nature and impact of engagement between CHWs and AYA with SCD within a transition to adulthood intervention.

Objective: To describe how the engagement between AYA with SCD and CHWs utilizing the IMPaCT model (Kangovi et al 14) facilitates self-management and advocacy skills for successful transition to adult care.

Methods: The COMETS study is a randomized clinical trial comparing the effectiveness of two self-management support interventions (CHWs and mobile health) versus usual care to improve health-related quality of life for transitioning AYA with SCD. Participants (n=405) were at least 17 years old, receiving care at one of five children’s hospitals in four US states (NY, OH, CT, PA), spoke English as a primary language, and were appropriate to transition to an adult hematologist in the next 12 months. Enrolled participants were randomized to receive a CHW, access to an mHealth app, or usual care for a 6-month period. This analysis focuses on the 120 participants randomized to the CHW arm, which used the IMPaCT model. The Individualized Management for Patient-Centered Targets (IMPaCT) model provides a college-accredited CHW training curriculum in which CHWs tailor patient support to their individual health goals (Kangovi et al 14). AYAs randomized to this arm received weekly check-ins from CHWs and support in setting and achieving goals related to health self-management, transition readiness, planning for school/work responsibilities, SCD knowledge, and self-advocacy and health system navigation.

Results: The median participant 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 (68%; n=83) had government sponsored insurance, and 54% (n=65) had severe SCD characterized by history of overt stroke, acute chest syndrome, or 3+ hospitalizations in past 3 years (Beverung et al 2015).

CHWs successfully established contact with 95% (n=111) of participants within a median of 5 days (range:0-132 days) of assignment to a participant. Participants set an average of 2.5 goals (total= 297) categorized as: Improving Skills to Manage Health (e.g., tracking health issues) (32%; n=96); Increasing Knowledge of Planning for School and Work (e.g., workplace skills and expectations) (31%; 94); Increasing knowledge of SCD and Healthcare (e.g., healthy behaviors) (21%; 63); and Improving Skills for Navigating Health Systems and Self-Advocacy (e.g. getting appointments) (15%; 44). Of these, 70% of goals (n=208) were resolved by graduation from the program and 13% (n=16) were abandoned after 1 month.

CHWs made 3021 contacts over the 6-month period (average 25 per participant) primarily via phone (54%; n=1643) and text message (38%; n= 1160). Other modalities included email (2.9%; n=88), in person at a clinic visit (1.5%; n=46), via video conferencing (0.8%; n=23), and in person in a community setting (0.6%; n=17). Of these, 63% (n=1900) contacts were meaningful interactions, defined by the study team as an interaction where CHWs and participants connected and discussed goal progress, averaging 21 minutes (median: 10 minutes; range 0-240 minutes). Participants gave their interaction with CHWs an average rating of 9.6 out of 10.

Conclusion(s): AYA with SCD demonstrated high levels of engagement with CHWs through consistent, weekly contact – predominantly via phone – and goal-oriented discussions. This study supports the effectiveness of tailored interventions, like CHW programs, for marginalized populations such as AYA with SCD. Future work should assess the long-term impact of the CHW intervention on patient outcomes, including ED visits, hospitalizations, and mortality among AYA with SCD.