Adaptation and Pilot Testing of a Patient-provider Communication Intervention for Adults with Sickle Cell Disease

PROJECT SUMMARY Sickle cell disease (SCD) is a severe genetic blood condition that primarily affects people of African descent. Adults affected by SCD are not only subject to significant morbidity and at risk for early mortality, but this patient population also experiences discrimination and significant disparities in health care. Communication

between patients living with SCD and their healthcare providers (HCPs) plays a critical role in treatment adherence and disease outcomes; the interactions between patients with SCD and HCPs are often of poor quality, strained, and at times even confrontational. These negative interactions may be detrimental to patient

self-care. However, little is known about patient-provider communication (PPC) needs among patients with SCD, and few studies have addressed the need for tools to help patients with SCD communicate with their HCPs. Tools designed to guide the patient’s communication have the potential to improve self-efficacy and

self-care, thereby improving health outcomes. SBAR3 is a communication strategy designed to be used across diverse patient populations to improve communication and health outcomes. The SBAR3 acronym stands for Share your story, Bring your background, Ask for what you want or need, Review the plan, Reflect on whether

it is right for you, and Repeat the plan. While SBAR3 has been successfully tested in other chronic disease populations as a serious game or digital health intervention, it has not been implemented in patients with SCD, nor taught as a face-to-face intervention. This K99 study will fill this evidence gap by assessing communication

needs in SCD care, adapting the SBAR3 intervention to meet these expressed needs, and evaluating the feasibility and acceptability of the adapted intervention to promote assertive communication among patients with SCD and their HCPs in outpatient care. The K99 specific aims will be achieved using qualitative and

human centered design (HCD) methods to work with stakeholders to (1) assess the communication needs of patients with SCD, and (2) to ensure that the SBAR3 intervention is engaging and acceptable. The R00 aim will (3) evaluate the feasibility and acceptability of the adapted SBAR3 intervention in a randomized controlled

trial. The training activities, mentoring team, and training environment will support the applicant in the development of the expertise and skills related to (a) HCD and qualitative methods, (b) PPC among diverse populations, and (c) design and conduct of multisite clinical trials. Completion of the proposed training and

research will provide the applicant with the skills, knowledge, and data to launch a successful program of research examining the impact of PPC on self-care management and health outcomes in patients with SCD. The K99/R00 will provide the foundation for a large-scale, R01-funded trial testing the effectiveness of the

adapted SBAR3 in SCD care and to further the applicants career focused on improving communication and disease-related self-care management in vulnerable minority populations managing chronic illness.