“We Have to Change How We Interact with the Patient”: Comprehensive Sickle Cell Care Is the Anchor for Inpatient Care Complexity

Background: People with sickle cell disease (SCD) experience painful and life threatening vaso-occlusive episodes (VOEs) that frequently lead to hospitalizations. Studies addressing VOE care largely exclude the inpatient setting. We aimed to 1) understand inpatient VOE care from the perspectives of adults with SCD and inpatient healthcare professionals, and 2) develop a conceptual model focused on dynamics of care to inform the development of effective, patient-centered models of inpatient SCD care.

Methods: We conducted a two-center (886-bed university hospital and 261-bed community hospital) qualitative study from 2022-2024 using a constructivist grounded theory approach. Adults with SCD with at least one hospitalization in the last 5 years, and healthcare professionals who deliver inpatient VOE clinical care or support its operations, participated in an interview or focus group that was transcribed verbatim. Our interview guide was informed by a literature review of inpatient SCD care, the Health Equity Implementation Framework, and the Systems Engineering Initiative for Patient Safety 3.0 model. Three researchers coded the data using a 2-step open coding followed by focused coding using Dedoose (v9.2.012). Data analysis occurred alongside recruitment and data collection, allowing for iterative interview guide development and refinement of our conceptual model.

Results: Thirty-eight participants were interviewed: 4 adults with SCD, 6 nurses, 8 hospitalists, 1 hematologist, 1 hematology/oncology fellow, 3 residents, 2 advanced practice providers, 5 pharmacists, 6 social workers/care managers, and 5 operational leaders. We identified four major categories explained below with an associated quote: comprehensive SCD care, patient-centered care, acute SCD care infrastructure, and structural competency. The conceptual model united these categories, anchored by comprehensive SCD care in facilitating patient-centered ideal inpatient VOE care.

Comprehensive SCD care

Inpatient SCD care requires comprehensive SCD care that includes an interdisciplinary approach across care contexts. This care should include not only clinical management, but other social factors that impact health that often disproportionately affect people with SCD.

“It's not one size fits all kind of thing...people have different needs or they're coming with different disabilities...there [needs] to be some kind of interdisciplinary approach.” -hospitalist

Patient-centered Care

Patient-centered care meant showing the patient they felt cared for by involving patients in decision making, respecting patient rights to make health decisions, etc. Healthcare professionals conveyed needing time in their workflow and ability to offer other management options for complex problems to be able to effectively provide patient-centered care for adults with SCD.

“I think patients struggle when they don't feel heard. And if they don't feel heard, then they can't trust what's happening. And then...that just sets us all up for failure.”-social worker

Acute SCD Care Infrastructure

Infrastructure includes processes, structures, and supports that standardize care (i.e., provider education, use of individualized care plans, and cohorting patients to specific units), support care escalation specific for VOE-related complications (e.g., emergent blood transfusion or apheresis), and ensure adequate staffing of interdisciplinary clinicians and staff with SCD expertise.

“Most of these hospitals don't even know about sickle cell...they're not even up to date [with] what it is, how they're supposed to treat you." – patient

Structural Competency

Hospital employees and staff should develop and maintain the capacity to recognize and respond to health and illness as the downstream effects of broad social, political, and economic structure (i.e., structural competency).

“There's a long history of our medical system brutalizing people of color...that sticks around, it's still bleeding into the care that we provide with sickle cell patients.”-resident

Conclusion: Comprehensive SCD care across care context is the necessary anchor to operationalizing ideal inpatient SCD care. Ensuring access to an interdisciplinary inpatient healthcare team that has sufficient time, infrastructure, and expertise is critical for delivering patient-centered care that ensures patients feel cared for and are heard.