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.