1. Sophie Lanzkron, MD, MHS Associate Professor of Medicine and Oncology Johns Hopkins School of Medicine

2.  Two major system-level barriers to the provision of high quality for adults with SCD care: ◦ Lack of established quality indicators ◦ Lack of available experts that can provide care to the SCD population  Can people with SCD receive high quality care outside of specialty care clinics?

3.  Emergency Department care for SCD has been estimated at $1.5 million/100 patients  Much of the cost driven by resulting hospitalization from ED visits.  These charges were 5 times greater than those for HIV.  75% of adults with SCD are covered by some form of public health insurance (Medicaid or Medicare) suggests a significant financial impact of SCD on the health care system.

4. The Journal of Pain Volume 8, Issue 6Volume 8, Issue 6, June 2007, Pages 460–466  Observational, multicenter, prospective, cohort study of patients who presented to US and Canadian EDs with a chief complaint of moderate to severe pain and were discharged home  Median time interval from triage to analgesic administration was 90 minutes (0 to 962 minutes).  Only 29% of patients who were given analgesics received them within 1 hour of arrival.  Three quarters of patients were discharged with moderate pain (45%; NRS, 4 to 7) or severe pain (29%; NRS, 8 to 10)

5.  Patients and healthcare providers are dissatisfied with the quality of SCD pain management.  SCD patients report: ◦ Not having enough involvement in decisions about their own care ◦ Providers do not demonstrate respect, trust, and compassion.  Basis for this belief- studies have demonstrated: ◦ Providers hold highly negative attitudes toward SCD patients ◦ Providers are strongly predisposed to suspect addiction in patients presenting for VOC care.

6.  Benjamin et al. in 2000 ◦ Bronx Comprehensive Sickle Cell Center. ◦ Used a specific assessment and treatment protocol in the setting of a day hospital,  pain was controlled in 90% of patients,  hospital admissions decreased by 40%  average length of stay for hospitalized patients decreased by 1.5 days. ◦ Key- patients were assessed and started on treatment within 15-20 minutes of arrival ◦ Patients were assessed at half hour intervals for pain, psychological distress, pain relief and adverse events.

7.  Hospitals concerned about losing volumes ◦ Lack of financial support  Lack of adult providers nationally to provide these services and build the units.  Current change in landscape creating an environment more conducive to the Infusion Center/Day Hospital model. ◦ Goals to decrease in-hospital care (admissions and readmissions)

8.  5 treatment slots for acute care visits  Open 7 days a week, 8 hours a day  Serves the needs of adult patients only  80-100 visits per month  Average LOS in SCIC- 4 hrs 43 min.  85% of patients seen for VOC go home after treatment  ED admission rate has dropped from 50% to 20%

9. Am J Hematol. 2015 May;90(5):3 76-80.

11.  81% agreed/strongly agreed with: I feel perfectly satisfied with the way I am treated at the Infusion Clinic.  73% agreed/strongly agreed that their pain was adequately controlled.  74% agreed/strongly agreed that my complaints and concerns are addressed

12.  Rapid, aggressive treatment of pain ◦ Dosing of opioids hourly ◦ Frequent reassessments of pain (at least every 30 minutes) ◦ Use of adjuvant therapies (i.e. nonsteroidals)  Continuity of care- team of caregivers dedicated to providing high quality care to people with SCD  Provides comprehensive sickle care (hydroxyurea, etc.)  Social work services  Psychiatric services

13.  Standardize quality indicators ◦ Admission rate ◦ Readmission rates ◦ Time to first dose of opioid when in VOC ◦ Appropriate prescribing of hydroxyurea/transfusion therapy ◦ Quality of life

14.  Can/should infusion center model be widely disseminated? ◦ What size sickle population makes it cost effective to have dedicated acute care facility? ◦ Can acute management of VOC been done in oncology clinics/ medicine infusion clinics/FQHC/ED obs units?  What metrics should we use to judge success? ◦ Who will run these clinics?