Improving Care for Patients with Sickle Cell Disease: a Qualitative Study of Hospitalized Sickle Cell Patients
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University of Colorado, Anschutz Medical Campus, Aurora, CO, USA; 2Department of Medicine, Division of Hospital Medicine, Aurora, CO, USA.
J Gen Intern Med DOI: 10.1007/s11606-019-05304-z © Society of General Internal Medicine 2019
INTRODUCTION
Sickle cell disease (SCD) is a hereditary blood disorder that affects approximately 100,000 Americans.1 Acute pain episodes, or vaso-occlusive crises, account for approximately 70% of acute care visits for patients with SCD.1 Patients with SCD face unique obstacles to care, including difficulty communicating the severity of their pain and fear of being labeled as a “drug addict.”2 The combined annual cost of Emergency Department visits, Urgent Care visits, and hospitalizations for SCD has reached over $2.4 billion annually.3 In an effort to improve care for SCD patients who have required frequent readmission, we interviewed hospitalized SCD patients and asked for input on how our health system can better meet the needs of our SCD population.
METHODS
Adult SCD patients admitted to the inpatient medicine services at the University of Colorado Hospital between March 2017 and May 2018 were identified and approached for consent. Interviews were conducted by a professional research assistant (RA), digitally recorded, and transcribed verbatim. The interview script included questions regarding experiences with disease management, perceptions of quality of care, access to care (insurance, PCP, specialists, medications), and psychosocial factors affecting hospital experience and follow-up care (finances, living environment, behavioral health). Two team members independently analyzed the transcripts using a general mixed inductive/deductive approach to theme analysis supported by ATLAS.ti software. Following independent coding, differences between reviewers were resolved through group discussion (all four team members) and codes were developed through team-based iterative analysis. This study was IRB approved. Preliminary findings were presented (abstract and poster) at the Rocky Mountain Hospital Medicine Symposium on October 16, 2016, and the Society of General Internal Medicine national conference on April 12, 2018.
RESULTS
Twelve hospitalized patients with SCD were invited to participate in semi-structured interviews; seven consented and completed the interview. Those who declined participation included one patient with an imminent discharge and four patients who were unavailable when the RA reached them on at least 2 occasions. Interviews varied from 7.5 to 54 min (average length 16.5 min). Some patients provided extensive narrative explanations, while others provided brief answers and declined to expand their answer even with additional probing questions. All interviews contained valuable information and were included in data analysis. Identified themes included (1) the importance of patient/ provider relationships, (2) the challenges of readmission, (3) the relevance of psychosocial factors, and (4) healthcare system factors (Table 1). Patients highlighted a desire for cl
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