Rita V. Masese, associate in research, Nancy Crego, assistant professor, Christian Douglas, consulting associate, Terri DeMartino, research program leader, and Paula Tanabe, vice dean, research, co-wrote "A Needs Assessment of Persons With Sickle Cell Disease in a Major Medical Center in North Carolina" in "North Carolina Medical Journal." Gary Rains and Nirmish Shah, of Duke School of Medicine, and Emily Bonnabeau, former clinical research coordinator, also contributed.

Abstract

BACKGROUND Sickle cell disease (SCD) is a complex disease associated with many complications and a shortened lifespan. In 2016, the National Heart, Lung and Blood Institute funded 8 centers in the United States to form the Sickle Cell Disease Implementation Consortium, with the goal of improving SCD care. The aim of our study was to describe SCD self-efficacy, pain interference, and barriers to care from the perspective of persons with SCD in the North Carolina center.

METHODS Persons with SCD, aged 15 and older were recruited from a large SCD center in North Carolina. Surveys, focus groups, and interviews were completed.

RESULTS Fifty-one people completed a survey, and 14 people completed an interview or focus group. Barriers identified in the survey included self-care barriers, misconceptions related to hydroxyurea (an oral medication that reduces rates of pain crisis), limited provider knowledge, and stigma. Concerning self-efficacy, participants reported that they were able to manage their pain symptoms most of the time. Pain interfered most with the ability to participate in social and day-to-day activities.

Common themes from the focus groups and interviews included misconceptions about hydroxyurea, pain, provider knowledge, stigma, co-management, transportation, and insurance. Recommendations to improve care included the use of case managers, utilization of treatment guidelines, individualized pain protocols, and effective co-management by providers.

LIMITATIONS Participants were recruited from 1 SCD center and may not be representative of the entire SCD population in North Carolina.

CONCLUSIONS Participants described many perceived barriers to care, and their responses suggest a need for improvements in patient hydroxyurea education, provider knowledge, and care coordination.