Introduction: Sickle cell disease (SCD) is a complex disease for which pain is the hallmark, often results in end-organ failure, and is associated with early death. Primary care providers (PCP's), hematologists, and co-management between PCP's and hematologists are necessary to facilitate optimal patient outcomes. Due to the wide array of sickle cell related complications, multiple specialists are required to manage patients with SCD. We report outpatient visits per provider specialty type and co-management, for persons with SCD enrolled in Medicaid during a 12-month period in North Carolina.

Methods: Medicaid claims data from North Carolina for patients with a diagnosis of SCD (ICD 9 CM codes: 282.6x, ICD 10 CM codes: D57.0x, D57.1, D57.2x, D57.4x, D57.8x) and at least one month of enrollment in Medicaid between March 1, 2016 and February 28, 2017 were examined. Outpatient visits were identified by the current procedural terminology (CPT) code listed on the claim. Each outpatient visit was then categorized into a specialty using the descriptions from the Medicare Provider/Supplier to Healthcare Provider Taxonomy document that matched the billing provider code and the rendering provider code listed on the claim. If the billing provider or rendering provider code was either missing or did not link to a description that was informative, then those visits were placed in the "NULL" category to signify they were unidentifiable. The "Other Specialty" category included those specialty visits that were either not historically associated with SCD care (such as infectious disease) or occurred ≤1% of all specialty visits (such as dermatology or rheumatology), and excluding SCD specialists, general nurse practitioner and physician assistant visits. Additionally, each outpatient visit type was reviewed by the team and categorized into three broad categories: PCP (including pediatrician), hematologist (including pediatric hematologists), and non-hematology specialty type. An acute care specialty visit (CPT code) occurred outside the emergency department and was defined as a non-PCP and non-hematologist visit that we were unable to further determine specialty type.

A minimum of one PCP and one hematologist visit/patient during the study period was required to meet the definition of co-management. A fourth category of provider type (nurse practitioner or physician's assistant) was added whenever we were unable to determine if the NP or PA provided primary care, hematology, or other specialty care. These visits were not included in calculation of co-management. Descriptive statistics were used to report findings.

Results: 2850 patients [58% female, mean (SD) age - 23 (16)] were included in the cohort. Eighty-six percent of the sample was enrolled in Medicaid for a minimum of 10 months. Table 1 reports the number of visits, and visits/patient for each category of provider type. Patients had 2.96 (SD 3.76) PCP visits per patient and only 1.28 (SD 2.49) hematology visits per patient. Although there were a large number of PCP and hematology visits overall, only 34% of the cohort met the definition for being co-managed. Table 2 reports the wide array of non-hematology specialty visits by type. On average, patients had nearly the same number of non-hematology specialty provider visits than PCP visits.

Conclusions: Persons with SCD in NC had low rates of co-management and used outpatient services from a wide array of specialty providers. Importantly, hematologists had lower than expected outpatient visits and patients had a significant number of acute care outpatient visits. Navigating the large number of providers and specialists requires careful evaluation of our current model of care for treating SCD. Further efforts are required to increase co-management among complex chronic diseases such as SCD.

Disclosures

Shah:Novartis: Research Funding, Speakers Bureau. Tanabe:NIH and AHRQ: Research Funding; Alliant Health: Consultancy; Duke University: Employment.

Author notes

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Asterisk with author names denotes non-ASH members.

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