Linkage Coordinators in Sickle Cell Disease Care: Patient Insights from the RECIPE Study
Sula Hood, Catherine Viator, Sara Jacobs, Shannon PhillipsAbstract
Background
Sickle cell disease (SCD) is a chronic lifespan condition that requires multi-disciplinary management. Over half of adults living with SCD lack specialist care, resulting in missed screenings and opportunities for treatment. In human immunodeficiency virus (HIV) medicine, Linkage Coordinators (LCs) are an evidence-based intervention strategy effective in connecting newly diagnosed or disengaged people living with HIV to care, improving engagement and retention. However, use of LCs has not been explored for SCD which, like HIV, has complex needs. The Recruitment and Engagement in Care to Impact Practice Enhancement (RECIPE) multi-site study adapts the use of LCs to connect unaffiliated adults living with SCD (people who have not received care from a SCD specialist in the past 12 months) with SCD specialists to establish care. RECIPE LCs also provide education, connect patients with resources, help ease appointment anxiety, conduct appointment follow-ups, and help overcome barriers to care. The purpose of this presentation is to share preliminary findings from patients enrolled in the RECIPE study.
Methods
During their second appointment with the SCD specialist, newly affiliated patients were asked to complete a survey to provide socio-demographic information and feedback about their experience with the LC. Patients were also asked if they were willing to participate in an interview about their experiences with the LC. Interested respondents were included as potential interview participants (up to 5 per site). Interviews were held virtually on Zoom by a RECIPE study facilitator and note taker, audio and video recorded, and lasted 60 minutes. A structured interview guide was used to ask about the following domains: 1) reasons for SCD care unaffiliation, 2) circumstances related to meeting the LC, 3) perceptions of the LC experience, and 4) comfort with seeing a SCD specialist after meeting with the LC. Participants rated their sense of connection to the LC from 1 (least) to 10 (most). They were also asked about overall satisfaction with the LC and whether they'd recommend the LC to others living with SCD. Interviewees were compensated. Descriptive statistics (frequencies and proportions) were calculated for participant demographic characteristics from survey responses. Qualitative content analysis was used to identify emergent themes within responses for each interview domain and to extract illustrative quotes for each theme.
Results
Fifteen RECIPE study participants completed an interview. Most were Black or African American (86.7%), over the age of 35 (56%), and female (60%). Reasons for unaffiliation included: specialist retirement, provider dissatisfaction, difficulty finding specialists, limited local clinics, and low confidence in providers’ SCD knowledge. Transportation and finances were also noted as barriers to establishing SCD specialist care. Participants offered positive feedback about LC experiences, appreciating LCs as valuable support for overcoming barriers to care. They shared that LCs assisted with healthcare navigation, timely care for acute crisis, scheduling appointments, ordering medication, and arranging transportation. Those who traveled long distances said LCs helped arrange discounted lodging. LCs also assisted patients in finding jobs and connecting with SCD advocacy groups. Participants reported a strong sense of connection to their LC (average rating of 8.9 out of 10), and most recommended LCs for others living with SCD. Initial impressions described LCs as friendly, helpful, knowledgeable, and resourceful. Several said their LC made them feel safe or like family, and reported feeling affirmed, seen, and heard. Participants were also comforted by having similarities with their LC, like SCD diagnosis, race/ethnicity, and age. Participants valued LCs’ attentiveness and communication, noting frequent check-ins. Many also described their LC as being empathetic and welcoming. Most participants reported greater comfort consulting with the SCD specialist after meeting with their LC, and many planned future appointments, largely due to the LC’s positive influence.
Conclusions
Linkage Coordinators have shown to be impactful in SCD. They could also assist in patient retention and care engagement as shown for people living with HIV. Qualitative insights from RECIPE participants suggest that integration of LCs in SCD care teams enhances patient engagement, satisfaction, and retention for future appointments. More than providing resources, the LCs provided a personal touch. Patients view LCs as trusted advocates for their SCD care, and they provide invaluable psychosocial support for overcoming barriers.