Implementing linkage coordination: Patient experiences in the recruitment and engagement in care to impact practice enhancement (RECIPE) for sickle cell disease study Free

Background: Sickle cell disease (SCD) affects roughly 100,000 people in the United States and can result in significant morbidity, early mortality, and high medical costs. Ideally, people living with SCD should be treated by a sickle cell specialist, a medical provider with knowledge of guidelines about evidence-based SCD management. However, more than 50% of adults with SCD may not see a specialist resulting in a potential lack of comprehensive screening and inadequate access to disease-modifying therapy. The goal of the Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) study is to adapt from HIV treatment an evidence-based approach of using linkage coordinators to identify, engage, and link currently unaffiliated people living with SCD with SCD specialists.

Methods: The study was conducted in two waves, with Wave 1 starting in established SCD adult comprehensive care centers. Waves 1 and 2 includes four and six sites, respectively. Unaffiliated patients (i.e., patients who had not seen a SCD specialist in at least a year) are identified through various “pathways” – including clinical referrals, such as emergency rooms or OBGYN referrals, referrals through SCD community-based organizations and referrals based on surveillance data. The RECIPE study collects quantitative and qualitative data on patient experiences and satisfaction with working with a linkage coordinator to help establish care with a SCD specialist. These findings are from the Wave 1 newly affiliated patient survey (n=215) and patient interviews (n = 16) conducted from September 2024 to July 2025.

Results: Across all four Wave 1 sites most patients identified as non-Hispanic (range 88-100%), Black or African American (range 84-94%), ages 26-55 (range 55-76%), female (range 56-78%) and rated their current overall health as very good or good (range 64-76%). Interestingly, most patients also said this was not their first time seeing a SCD specialist (range 69-100%), although all were currently unaffiliated from care. Overall, patients across all four sites reported a number of reasons as to why they were unaffiliated from care, including having re-located (range 14-20%), felt good and didn't believe they needed a provider currently (range 8-24%), and not being able to find a provider (0-19%). In addition, patients also reported being treated poorly in the past by a health care provider (range 10-14%) and being “lost” in the transition from pediatric to adult care (range 0-15%). Overall, patients reported that the linkage coordinator helped them with all or at least some of the barriers their faced to attending their appointment (range 33-100%) and among those reported working with the linkage coordinator most reported that the linkage coordinator helped a lot or some in getting them care (80-98%) and that they received very helpful information and support from the linkage coordinator. In addition, the vast majority would recommend working with the linkage coordinator to family and friends (range 80-100%).

Discussion: Overall, unaffiliated patients with SCD had a positive experience and were very satisfied working with the linkage coordinator. Patients described their experience as “less stressful,” and the linkage coordinator made the bridge to care more “accessible and easier.” These findings demonstrate that individuals with SCD are satisfied with the implementation of a linkage coordinator, implying successful adaptation of this role from HIV treatment. We plan to collect and analyze cost data related to implementation of the linkage coordinator to assess long-term sustainability. We also plan to use these findings to generate evidence-based strategies for finding and engaging people living with SCD who are unaffiliated from care and for building readiness and capacity in diverse SCD centers. In addition, this evidence will guide future expansion of SCD centers and fill clinical service gaps. Lessons learned from Wave 1 will inform Wave 2 site implementation and may be generalizable to other populations affected by health disparities to increase patient engagement and enhance retention.