Congratulations to Stephanie Ibemere, postdoc, who has been selected to receive an award for her Duke REACH Equity Center’s Research, Education, and Training Subcore Research Voucher proposal entitled: “Developing the Sickle Cell Disease Outpatient Satisfaction Survey (Sickle OPS2) to Assess Patient Satisfaction with Outpatient Sickle Cell Disease (SCD) Chronic Care Management." This proposal is funded for a one-year period with a start date of July 1, 2021.

Abstract

Sickle cell disease (SCD) is complex chronic disease which predominately affects those of African ancestry which results in serious complications and early mortality. SCD complications span all organ systems requiring complex and extensive outpatient follow-up to mitigate co-morbidity development and reduce early mortality. Many people living with SCD receive care from primary care, a hematologist, and/or other specialists including nephrology, cardiology, pulmonology, neurology, etc. Additionally, the COVID-19 pandemic increased telehealth use in SCD outpatient management, however, it is unclear how this care delivery shift has impacted this population. Patients must learn this intricate system and navigate their multifaceted, often fragmented outpatient care which is increasingly available both in person and via telehealth. Best practice suggests outpatient care provision in SCD management be guided by the Chronic Care Model to ensure integration of services and high quality care. However, the tools currently available to assess patient satisfaction (a proxy for quality of care) with outpatient SCD care are limited in their structure, definitions of satisfaction, and generalizability to the SCD population. The proposed study aims to address these limitations by engaging those living with SCD to learn what aspects of care are most pertinent to patients and to describe the barriers and facilitators to receiving high quality outpatient SCD care. From this information, we will develop the Sickle Cell Outpatient Satisfaction Survey. The proposed study aligns with the REACH Equity's theme to reduce healthcare disparities in the clinical setting as this study will produce a tool based in the patient's perspective on high quality SCD care. The information gathered from this tool can then be used to assess gaps in our current care models and thus inform effective intervention development to address the needs of patients living with SCD while minimizing health inequities.