2.2 Sickle Cell Day Hospitals

Other states have found success in expanding telehealth services specifically for their SCD patients. During the COVID-19 pandemic, Boston Medical Center used video and phone communications to assess the needs of people with SCD and prevent lapses in care.217 Patients’ responses to the use of these remote communications were overwhelmingly positive and no-show rates dropped significantly.

The Medical College of Georgia (MCG) Sickle Cell Center established three telemedicine clinic sites in rural areas throughout the state of Georgia to meet the clinical needs of patients with SCD and reduce no-show appointments.218 This resulted in an increase from 1,143 to 1,889 encounters per year, including an increase from 271 to 745 rural encounters, with the addition of just one physician assistant. The University of Alabama at Birmingham School of Medicine conducted a retroactive review of hydroxyurea laboratory and clinical outcomes and found that establishing satellite sites and implementing telehealth was just as effective in treating SCD patients with hydroxyurea as traditional in-person treatment.219

In the short term, requiring PHPs to cover telehealth services would set a floor for behavioral and psychological health services covered by Medicaid throughout the state. In the medium- to long-term, NC Medicaid should consider supporting telehealth clinic sites in rural areas, potentially through a hub and spoke model—as outlined in Part I—and reimbursing hospital outpatient and physician services at parity.

NC DHHS should bolster established SCD day hospitals in North Carolina.

Implementation: • NC DHHS should support legislation approving increased funding through state grants for established SCD day hospitals in North Carolina.

Background

Vaso-occlusive crises (VOCs)—the most common cause of acute morbidity in SCD— lead to episodes of intense pain and are the defining feature of SCD.200 These pain crises are unpredictable, start suddenly, and are poorly treated, leading to much of the current care for VOCs to occur through emergency department (ED) visits and hospitalizations.201

Entering the ED is often a last resort for patients.202 Patients report, “feeling intense anxiety and stress about going to the hospital, sometimes delaying or avoiding seeking necessary care.”203 When experiencing VOCs, individuals with SCD are left with limited options. They often end up an ED—the last place they want to be—where they are “too often…treated with stereotypical idealism and inherent bias that ultimately leads to them avoiding going for help or simply not receiving it in their greatest time of need.”204

Individuals with SCD repeatedly report suboptimal care in EDs.205 Non-SCD specialist providers often hold the misperception that SCD is simply a pain condition, an oversimplification that can lead to inappropriate care (e.g., lacking treatment with fluids, oxygen, and other medicines). Too often ED providers have negative attitudes and perceptions of SCD patients. ED providers frequently label individuals with SCD as “drug seeking” or “Sickler,” a derogatory term steeped in the historic and racist disregard for the SCD

patient.206 In one study, the use of the term “Sickler” amongst ED providers was significantly associated with negative attitudes toward people with SCD.207 Patients with SCD are forced to experience “inadequate disrespectful and even humiliating treatment” which, unfortunately, also leads to longer wait times than people with other pain issues and delays in analgesic administration.208

As an alternative to EDs—when funding is available—SCD providers operate and run SCD day hospitals (DHs). DHs offer several benefits beyond the capacity of EDs for treatment of uncomplicated VOCs, including improved patient-centered care, improved pain relief, and reduced hospital admissions.209 DHs are staffed with providers familiar with SCD and its treatment, such as Advanced Practice Providers under the supervision of a SCD physician. Patients experiencing uncomplicated VOCs can enter this facility, a stable setting for their comprehensive management, instead of going to an ED. Often, DHs are operated in conjunction with comprehensive SCD care facilities.

North Carolina Context

Currently, three SCD DHs operate within North Carolina at ECU, Duke University Medical Center, and Wake Forest School of Medicine.210 Duke’s DH operates Monday through Friday, 8 AM to 9 PM and Saturday, 8 AM to 4 PM. ECU’s DH operates Monday through Friday, 9 AM to 5 PM. At ECU’s DH, a major challenge is limited funding for necessary staff and appropriate hours of operation. Currently, the ECU DH has two nurses at only 80 percent full-time equivalent plus vacations. Part of the DH program is funded through the state, which initiated funding in 1998 by including it in the state budget. However, state funds dedicated to this DH has not increased, resulting in the need to search for additional funding elsewhere. Improved Outcomes and Cost-Savings SCD specialists from the ECU DH explained that the use of SCD DHs can dramatically reduce hospital admissions for adult patients. Further, the literature finds that treating uncomplicated VOCs in DHs consistently reduces rates of hospital admissions compared to the ED.211 DHs are able to assess uncomplicated VOCs and begin analgesics to treat pain more rapidly than EDs.212 Patient satisfaction is higher in day hospitals than in EDs, with patients sometimes opting to manage pain at home while waiting for DHs to open in an effort to avoid the ED.213

SCD specialists at NC sickle cell centers at Duke, UNC and ECU all emphasized that individuals with SCD only choose to go to the ED when they are absolutely out of all other options, which is consistent with the literature.214 DHs are able to provide a supportive environment with improved patient care. The improvements in outcomes and care show a potential for overall savings for both payers and providers.215 For example, providers from the ECU DH explained that often when patients go to the ED because their DH is closed, they receive unnecessary and costly scans such as computerized tomography (CT). Institutional cost savings are attributable to use of DHs and reduced hospitalizations.216

Additional Considerations

Sickle cell DHs reduce ED use, subsequent admissions, and overall costs. North Carolina has several operational DHs already, which makes the implementation of this recommendation a feasible short-term task. NC DHHS should encourage the NC General Assembly to take advantage of the infrastructure already in place within the state’s current DHs and dedicate additional funds and resources to expand the hours of operation during the week and weekend at these sites.

The Montefiore Medical Center established a DH in the Bronx Comprehensive Sickle Cell Center as a demonstration project between 1989 and 1993. Following its establishment, a five-year study showed a 40 percent reduction in the hospital admission rate for patients with VOCs. Admission rates were five times less frequent from the DH (8.3 percent) compared to the ED (42.7 percent) for uncomplicated VOCs. Further, the length of stay for patients seen in the DH decreased by 1.5 days compared to patients seen elsewhere.220 Similarly, a DH in Texas reduced hospital admission rates by 43 percent.221

The University of Illinois at Chicago Comprehensive Sickle Cell Center’s DH expanded its operations and saw positive benefits for patients and the health system. In 2014, the DH expanded hours of operation from 8 AM to 5 PM Monday through Friday to 8 AM to 11 PM Monday through Friday. This increased utilization by SCD by almost five-fold while decreasing hospital admission rates and decreasing lengths of stay for inpatient admissions.222 Expanding hours of operation provided SCD patients experiencing VOCs an alternative care option that allowed them to avoid the ED. This expansion improved outcomes and may represent significant cost savings to the health system. Expansion of DH hours provides people with SCD the opportunity to experience improved care and outcomes. The ECU team explained that, with limited hours, patients who call in for treatment later in the day do not have the opportunity to receive full treatment before the DH closes for the day. Instead, they may need to be directed to the ED to initiate or continue treatment.