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5049 Improving Treatment Adherence in Patients with Sickle Cell Disease

Program: Oral and Poster Abstracts
Session: 901. Health Services and Quality Improvement - Non-Malignant Conditions: Poster III
Hematology Disease Topics & Pathways:
Clinical Practice (Health Services and Quality), Diversity, Equity, and Inclusion (DEI)
Monday, December 11, 2023, 6:00 PM-8:00 PM

Justine Hung, MD1*, Moniba Nazeef, MD2, Wendy Curran, MS, RN1*, Grace Nixon, PharmD, BS1*, Eva K. Allen, ANP, RN1* and Tara Hefty, MSW1*

1Division of Hematology, Medical Oncology and Palliative Care, University of Wisconsin Hospitals and Clinics, Madison, WI
2Department of Medicine, The University of Wisconsin-Madison, Madison, WI

BACKGROUND: Crizanlizumab is approved for treatment of sickle cell disease (SCD) patients with frequent pain crises and hospital admissions. Here, we address systemic factors that have led to sub-optimal adherence to monthly crizanlizumab infusions at our institution.

Due to 340B status limitation, the drug was originally offered at a site affiliated to our hospital with little SCD team presence. In 2020, UW hospital (primary site of SCD care) acquired 340B status, but transferring crizanlizumab infusions to UW hospital was not prioritized. In 2022, our institution’s crizanlizumab adherence was 22%1. Patients receiving crizanlizumab were interviewed to identify adherence barriers. Top barriers included location (44%), scheduling (44%), and low knowledge about the medication (67%). A detailed analysis with SCD team input revealed barriers such as restriction on opioids for day treatment, scheduling delays after hospital admissions, onerous paper orders process, different EMRs, and poor communication/coordination between sites (Fig 1).

METHODS: The hospital leadership was appraised of these barriers in a series of meetings by the SCD team and approval to administer crizanlizumab at UW hospital infusion center was granted. UW health pharmacy and infusion staff planned a transition phase with 5 patients transitioned each month between March-April 2023. Crizanlizumab orders were updated in the EMR, and infusion nursing staff received training about the drug. Smart phrases were created for patient education in after visit summaries (AVS). Day treatment with IV fluids and pain management was offered with infusions. SCD care coordinator and social worker helped with scheduling, transport, and childcare. Providers aimed to discuss treatment goals and pros/cons during visits. Goal was set to assess adherence at months 3 and 12 after implementation. Average rate of adherence was defined as percent of prescribed treatments taken by the patient over a specified time period. In case of hospitalization, adherence was defined as rescheduling and receiving the treatment. We aimed to improve adherence to 50% at 3 months and 75% at 12 months if crizanlizumab FDA approval is maintained.

RESULTS: By mid-July 2023, 11 patients were transitioned to UW Hospital for crizanlizumab infusions. 10/11 patients received the drug during this period (1 patient taken off due to pregnancy). The average adherence rate increased from 22% to 71% at 3 months, exceeding the original goal. 5/10 patients had an adherence rate of 75% or more. Additionally, 70% received at least one visit from the SCD social worker (SW) during treatment and 70% saw their provider concurrently with at least one visit. All patients received day treatment with supportive IVFs and/or pain medications during the infusion visit (Fig. 2). Only 2/10 patients had 25% or less adherence which occurred due to scheduling errors that will be addressed moving forward.

DISCUSSION: Our study aims to address both intentional and unintentional barriers to crizanlizumab adherence that included infusion location, scheduling, and patient education. Our team advocated for the transition of infusions to the main hospital where they receive all other SCD care. This provided patients with direct access to their SCD team during infusions. Care coordinator and social work involvement helped consolidate treatment-related orders to one EMR, standardize nursing and patient education, organize scheduling, and address social barriers. The adherence rate increased from 22% to 71% at 3 months after implementation. Although the current approval of crizanlizumab is under review, we believe the barriers addressed in this project can be extended to current SCD treatments and upcoming novel therapies. Splitting care sites due to insurance and logistical reasons can create barriers for this vulnerable population due to complex care coordination and psychosocial needs. The rapid improvement in crizanlizumab adherence displayed here is a testament to the impact of having a dedicated SCD team at one leading site to advocate for and address the unique barriers to healthcare experienced by people with SCD.


  1. Nixon G, Fallon M, Fulcer K, Curran W, Nazeef M, Pradhan R. How can infusion therapy adherence by improved in Sickle Cell Disease. American Society of Health-System Pharmacists; Dec. 2022. Las Vegas, NV.

Disclosures: No relevant conflicts of interest to declare.

*signifies non-member of ASH