Abstract
Sickle cell disease is a genetic blood disorder with significant morbidity and mortality. This disease is characterized by vaso-occlusive pain crisis and end-organ damage, ultimately contributing to poor quality of life and reduced life expectancy. While many advances have been made in the management of sickle cell disease, there remains room for improvement in the delivery of care for these patients.
The Lifespan Academic Medical Center is the largest health care organization in the state of Rhode Island. In January of 2018, a large cohort of patients was referred to Lifespan's Cancer Institute for treatment of sickle cell disease. The patients had previously been cared for in private medical practices in the state. In response to the large number of referrals, the Lifespan Cancer Institute established a Sickle Cell Disease Multidisciplinary Clinic (SCDMDC). Disciplines represented include nursing, hematology, psychiatry, social work, pharmacy and pain and palliative care. Goals of care are to address the underlying disease process, treat pain effectively, and prevent and manage end-organ damage. Patients meet with hematology, pain management and social work during their intake appointment, and with psychiatry as indicated. The multidisciplinary team works with each patient to develop a treatment plan to achieve the patient's life and health-care goals. In addition to the disciplines included in the clinic, other departments such as emergency medicine, nephrology, ophthalmology, orthopedics, pulmonology and cardiology have collaborated with the SCDMDC to provide comprehensive care to patients.
The Sickle Cell Disease Multidisciplinary Clinic was established in January of 2018. The initial priority was to enroll and transition patients who did not have access to hematologic care. Additional patients were enrolled based on an urgent need for a multidisciplinary approach. Thirty patients were enrolled within the first 3 months. Of these 30 patients, 6 patients could not identify a hematologist responsible for their care prior to enrollment. Two of these 6 patients were formerly pediatric patients who never transitioned appropriately to adult care. The group of 30 included another young adult who transitioned directly from the children's hospital to the SCDMDC within the same healthcare system. While a multidisciplinary approach is typically well-established and utilized in the pediatric setting, it is often lacking in the adult healthcare system. This can be intimidating for young adults and discourage them from completing the transition process. As such, the SCDMDC provides an opportunity for a smoother transition from pediatric to adult care for patients with sickle cell disease within our institution.
This initial cohort of patients allowed us to review emergency department (ED) presentations and hospital admissions for pain crisis at a single institution 6 months prior to and 6 months after implementation of the SCDMDC. Two patients within the cohort were identified as high healthcare system utilizers. In the 6 months prior to enrollment in the SCDMDC, patient A presented to the ED 49 times, resulting in 15 admissions for a total of 81 days hospitalized and an average length of stay of 5.4 days. In the 6 months after enrollment, patient A presented to the ED 41 times, resulting in 6 admissions for a total of 16 days hospitalized and an average length of stay of 2.7 days. The second high-utilizer, patient B, presented to the ED 24 times, resulting in 13 admissions for a total of 44 days hospitalized and average length of stay of 3.4 days in the 6 months prior. After enrollment in the SCDMDC, Patient B presented 41 times, resulting in 18 admissions for a total of 35 days hospitalized and average length of stay of 1.9 days. The other 28 patients collectively had 39 admissions for a total of 318 days hospitalized and average length of stay of 8.2 days prior to implementing the SCDMDC, compared to 28 admissions for a total of 152 days and average length of stay of 5.4 days in the 6 months after the start of SCDMDC. This decrease in admissions, days hospitalized and average length of stay is likely due to the comprehensive and multidisciplinary approach to patient care with the SCDMDC. Initial observations suggest that the development of the Sickle Cell Disease Multidisciplinary Clinic delivers high-quality care that reduces hospitalization and thus, improves quality of life.
Disclosures
No relevant conflicts of interest to declare.
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