Introducing the SCDAA and oneSCDvoice Partnership
Happy New Year! We hope that you are ushering in a happy and healthy 2020. We are anticipating exciting new breakthroughs this year, from the news of the first patient cured of sickle cell disease through gene therapy to new legislation helping to provide treatment access to patients. As we kick off the new year, we wanted to let our community members know of an important new partnership to the oneSCDvoice platform. First, we give a heartfelt Thank You to the team at Pfizer for their commitment to the sickle cell community and for their tremendous support in making the oneSCDvoice platform the success it is. As we move into 2020, Pfizer made possible an educational grant to enable the platform to have a tighter alignment within the sickle cell disease community by transitioning the management of the platform to the preeminent patient advocacy organization—the Sickle Cell Disease Association of America (SCDAA).
All of us on the oneSCDvoice team are looking forward to this close partnership which will bring tremendous value to the sickle cell community. As part of our combined new mission we hope to help drive initiatives such as the Get Connected Patient Registry, help support and drive greater awareness of legislation and advocacy efforts. As always, we will continue to facilitate access trustworthy news, research, and information on sickle cell disease as well as be a trusted space for support and conversation.
Happy 2020 and stay tuned for exciting new things to come!
The oneSCDvoice team.
Background: Sickle-cell disease (SCD) causes significant morbidity, premature mortality, and high disease burden, resulting in frequent health care use. Comanagement may improve utilization and patient adherence with treatments such as Hydroxyurea. The purpose of this study was to describe acute-care utilization in Medicaid-enrolled patients with SCD, patient factors associated with comanagement, and adherence to Hydroxyurea.
Methods: Data from 2790 patients diagnosed with SCD, age 1 to 65+ years, enrolled at least 1 month in North Carolina Medicaid between March 2016 and February 2017, were analyzed. Outpatient visits were categorized as primary care, hematologist, and nonhematologist specialist. Nurse practitioners or physician assistants with unidentified specialty type or family practice were categorized separately. Comanagement was defined as a minimum of 1 primary care and 1 hematologist visit/patient during the study period.
Results: There were notable age-related differences in utilization of health care services. Only 34.82% of the sample was comanaged. Comanagement was higher in the 1-to-9-year-old (44.88%) and 10-to-17-year-old groups (39.22%) versus the 31-to-45-year-old (30.26%) and 65+-year-old (18.75%) age groups. Age had the greatest influence (AUC = 0.599) on whether or not a patient was comanaged. Only a third of the sample (32.24%) had at least 1 Hydroxyurea (HU) prescription. Age was the most predictive factor of good HUadherence (AUC = 0.6503). Prediction by comanagement was minimal with an AUC = 0.5615.
Conclusion: Comanagement was a factor in predicting HUadherence, but further studies are needed to identify the frequency and components of comanagement needed to increase adherence and reduce acute care utilization.
Abstract sourceFull text
Introduction
• Describe the optimal hemoglobin level when transfusing a sickle cell patient
• List common reasons for transfusing individuals with sickle cell disease
• Recognize common complications of transfusion in sickle cell disease
• Locate current evidence-based recommendations for transfusion in sickle cell disease
Case 1: Use of Transfusion during Acute Illness
• Recognize indications for red blood cell transfusion during acute illness in individuals with sickle cell disease
• Describe appropriate selection of blood products for transfusion during acute illness in individuals with SCD
• Identify management strategies for acute splenic sequestration in SCD
• Describe indications for RBC transfusion prior to elective surgical procedures in SCD
Case 2: Delayed Hemolytic Transfusion Reactions
• Describe practice recommendations for transfusion in sickle cell disease patients with acute chest syndrome
• Explain the pathophysiology of delayed hemolytic transfusion reactions and hyper hemolysis
• List techniques for evaluating alloantibodies and DHTR
• Explain the assessment and management of DHTR
Case 3: Management of Chronic Transfusion
• Describe the role of chronic transfusion in preventing and managing certain complications of sickle cell disease
• Describe prevention and management of alloimmunization in individuals on chronic transfusion
• Describe the importance of iron overload in chronically transfused patients with sickle cell disease
• Describe the management of iron overload in patients on chronic transfusion
Abstract source
Happiness Is an Inside Job
I often wish we could control all the things that influence our lives; but as I age, I have found that so much that affects us is out of our control. The only thing we can control is how we respond to situations.
I am naturally a happy person, but there have been times in my life when the happiness was sucked out of me. I found myself going down a deep hole and could feel my happiness slipping away. I got help and used all my support systems; I surrounded myself with happy people and started reading inspirational quotes at the beginning of every day. It was hard work and took commitment, especially since I wasn’t necessarily feeling happy while I was doing these things. However, even though I wasn’t conscious of it, after a while, I realized my happiness was returning. Now it is my default. I still cry, despair, grieve, and mourn, but those are not my default settings—HAPPINESS is my default.
In 2020, make happiness your default setting. Share with us some things you have used to keep happiness on the inside.
Yvonne M. Carroll, RN, JD
Director, Patient Services
Department of Hematology
St. Jude Children’s Research Hospital
