Community Health Worker and Mobile Health Programs to Help Young Adults with Sickle Cell Disease Transition to Using Adult Healthcare Services – the Comets Study; Results from Patient-Reported Outcomes at 6 Months
Authors: Jan Sophia , Steinway Caren , Belton Tanisha , Shults Justine , Bennett Laura , Griffis Heather , Aygun Banu , Appiah-Kubi Abena , Apollonsky Nataly , Boruchov Donna , Niss Omar , Schwartz Lisa A. , Crosby Lori E. , Barakat Lamia , Andemariam Biree , Rubin David , Smith-Whitley Kim 
Published: December 2024

Background: Transitioning from pediatric to adult care poses challenges for young adults with sickle cell disease (SCD), leading to increased morbidity and mortality. This prospective, randomized study evaluated the effectiveness of community health worker (CHW) support or a mobile health application (iManage SCD) compared to usual care in improving quality of life and other relevant outcomes for young adults with SCD.

Methods: This randomized, multicenter, controlled trial, enrolled individuals with SCD aged &gt;=17 years from five U.S. children's hospitals. Participants were randomized 1:1:1 to receive a six-month intervention of CHW support, iManage SCD, or usual care. Both the interventions included goal setting, self-management skill development, symptom tracking, and transition support. The CHW intervention provided weekly synchronous support to participants primarily via phone calls, while iManage SCD offered virtual peer support via interaction with discussion boards. The usual care group received standard care with a transition checklist for consistency across sites. The primary outcome was quality of life, assessed using the PedsQL for SCD. Secondary outcomes included SCD knowledge, transition readiness, and social support. Mixed effects models were used to predict baseline and follow-up scores within groups and differences in changes between groups.

Results: A total of 405 participants with SCD were enrolled in the study. Baseline demographic data, clinical characteristics and markers of disease severity were comparable across study arms. At 6 months, the intervention groups (CHW and iManage SCD), combined for analyses, showed modest improvements in quality of life compared to usual care (PedsQL score : 3.4 [95% CI -0.9, 7.6], P=0.005). The largest change was seen among the CHW group, which showed an increase of 4.7 points at 180 days compared to controls (95% CI: -0.3, 9.7, p = 0.002). The iManage SCD group improved by 2.2 points compared to controls (95% CI: -2.7, 7.1, p = 0.048). Among the components of PedsQL, the largest change was observed in the communication II subscale. No significant differences were found in SCD knowledge, transition readiness, or social support.

Conclusion(s): Both community health worker support and mobile health programs hold promise for enhancing the quality of life for young adults with SCD transitioning to adult care, with the CHW intervention demonstrating a more pronounced effect. These findings underscore the importance of integrating such programs into routine care and can provide guidance to clinic directors in their adoption of these tools to improve transition outcomes for this vulnerable population.