66th ASH Annual Meeting: 900. Health Services and Quality Improvement: Hemoglobinopathies: Poster III

Symposia: Health Services and Quality Improvement: Hemoglobinopathies Oral and Poster Abstracts
Poster

Research, Sickle Cell Disease, Adult, Clinical Practice (Health Services and Quality), Clinical Research, Health outcomes research, Hemoglobinopathies, Health disparities research, Pediatric, Education, Supportive Care, Diseases, Gene Therapy, Treatment Considerations, Biological therapies, Real-world evidence, Clinical procedures, Young adult , Study Population, Human, Maternal Health

Halls G-H (San Diego Convention Center)

4997

Identifying Pediatric Patients with Sickle Cell Disease at High Risk of Experiencing Chronic Pain after HSCT

Henna Butt, MD¹, Eduardo A Trujillo Rivera, PhD²^* and Christina M. Wiedl, DO¹^*

¹Center for Cancer and Blood Disorders, Children's National Hospital, Washington, DC
²Division of Critical Care Medicine, Children's National Hospital, Washington

4998

Assessing Primary Stroke Prevention Barriers and Facilitators in Children with Sickle Cell Anemia in Puerto Rico: A Mixed Methods Study Design

Gabriela Ramirez Cuebas, MD¹, Jose A. Mejias²^*, Exa Mejías Ramos, MD¹^*, Keishla Figueroa Colón, MD¹^*, Mark Rodeghier, PhD³^*, Rosa Diaz Torres, MD⁴^*, Allison A. King, MD, PhD, MPH⁵ and Michael R. DeBaun, MD, MPH⁶

¹Department of Pediatrics, University of Puerto Rico School of Medicine, San Juan, PR
²University of Puerto Rico School of Medicine, San Juan, PR
³Rodeghier Consultants, Chicago, IL
⁴Department of Pediatric Hematology Oncology, University of Puerto Rico School of Medicine, San Juan, PR
⁵School of Medicine, Washington University, Clayton, MO
⁶Vanderbilt-Meharry Center of Excellence in Sickle Cell Disease, Vanderbilt University Medical Center, Nashville, TN

4999

Exploring the Patient Perspective of Gene Therapy for Sickle Cell Disease

Clare Nimura, BA^1,2, Lisbel Gonzalez, BA²^*, Tatum Brown, BS²^*, Layla N Van Doren, MD, MBA³, Kristine Karkoska, MD, MS⁴, Seethal A Jacob, MD, MS⁵, Sharl Azar, MD⁶, Alexander A Boucher, MD⁷ and Patrick T. McGann, MD, PhD^1,8

¹The Warren Alpert Medical School of Brown University, Providence, RI
²Lifespan Comprehensive Sickle Cell Center, Providence, RI
³Section of Hematology, Division of Medicine, Yale School of Medicine, New Haven, CT
⁴University of Cincinnati College of Medicine, Cincinnati, OH
⁵Division of Pediatric Hematology, Oncology, and Stem Cell Transplant, Riley Hospital for Children, Indianapolis, IN
⁶Hematology and Medical Oncology Division, Department of Medicine, Massachusetts General Hospital and Harvard Medical School, Boston, MA
⁷Division of Pediatric Hematology and Oncology/Division of Hematology, Oncology, and Transplantation, University of Minnesota, Minneapolis, MN
⁸Brown University Health Sickle Cell Center, Providence, RI

5000

Joint Sickle Cell-Gynecology Clinic Improves Access to Reproductive Health

Mofiyinfoluwa A Obadina, MD¹, Lindsey Akpuogu, BA¹^*, Tara Alin, NP²^*, Kimberly Malloy, MD³^* and Jane A. Little, MD⁴

¹Department of Medicine, Division of Hematology, University of North Carolina Chapel Hill, Chapel Hill, NC
²Division of Hematology and UNC Blood Research Center, Department of Internal Medicine, University of North Carolina at Chapel Hill, Chapel Hill, NC
³Department of Obstetrics-Gynecology, University of North Carolina Chapel Hill, Chapel Hill, NC
⁴University of North Carolina, Chapel Hill, NC

5001

Clinical and Economic Impact of Long-Term Disease Modifying Transfusions in Adults As a Prophylactic Intervention for Sickle Cell Disease Crises

Matthew Cawson¹^*, Sarah Medland²^*, Jamie Bainbridge²^*, Isabel Eastwood²^*, Stuart Mealing²^*, Arne de Kreuk, MD, PhD³, Martin Besser⁴^* and Anna Yudina⁵^*

¹Terumo BCT Europe, Larne, NI, United Kingdom
²York Health Economics Consortium, York, United Kingdom
³King's College Hospital NHS Foundation Trust, London, United Kingdom
⁴Cambridge University Hospitals, Cambridge, United Kingdom
⁵Terumo BCT Europe, Zaventem, United Kingdom

5002

Clinical and Economic Impact of Long-Term Disease Modifying Transfusions in Paediatrics As a Prophylactic Intervention for Sickle Cell Disease Crises

Matthew Cawson¹^*, Sarah Medland²^*, Jamie Bainbridge²^*, Isabel Eastwood²^*, Stuart Mealing²^*, Arne de Kreuk, MD, PhD³, Martin Besser⁴^* and Anna Yudina⁵^*

5003

Azithromycin Avoidance in Pediatric Patients with Sickle Cell Disease and Respiratory Infections

Elizabeth Stone, PharmD^*, Peter Wenger, MD^*, Jayshree Kumta, MD^*, Shalu Narang, MD, MPH, Amanda Clouser, PharmD^*, Leonard Emuren, MD PhD^* and Adam Sivitz, MD^*

Newark Beth Israel Medical Center, Newark, NJ

5004

Multi-Disciplinary Care Model for Transition and Re-Transition after Gene Therapy in Sickle Cell Disease

Roy Kao, MD¹, Lidan Gu²^*, Brianna Yund²^*, Melissa Kay Claar, CNP²^*, Asmaa Ferdjallah, MD³^*, Katie L Greenwood, MD⁴^*, Samantha Mallory, MD⁵^*, Rae Blaylark⁶^*, Caitlyn Thompson, RN, BSN, PHN¹^*, Erica Ripken, BA⁷^*, Andrea Watson, MD⁸^*, Samuel J. Milanovich, MD⁹^*, Alexander A Boucher, MD¹⁰, Ashish O. Gupta, MBBS, MPH² and Stephanie A. Fritch Lilla, MD¹¹

¹University of Minnesota, Minneapolis
²University of Minnesota, Minneapolis, MN
³Mayo Clinic, Rochester, MN
⁴Children's Minnesota, Edina, MN
⁵Blank Children's Cancer and Blood Disorders, Des Moines, IA
⁶Sickle Cell Foundation of Minnesota, Minneapolis, MN
⁷National Marrow Donors Program, Minneapolis, MN
⁸Essentia Health, Duluth, MN
⁹Sanford Children’S Specialty Clinic, Sioux Falls, SD
¹⁰Division of Pediatric Hematology and Oncology/Division of Hematology, Oncology, and Transplantation, University of Minnesota, Minneapolis, MN
¹¹Children's Minnesota, Minneapolis, MN

5005

Assessing Social Media Preferences and Developing Digital Health Care Transition Education Materials for Emerging Adults with Sickle Cell Disease: A Mixed Method Pilot Study

Abigayle Mazzocco, BS^1,2^*, Justin Williams, PhD³^*, Elna N. Saah, MD⁴, Ramona Lawrence, DrPH, MPH⁵, Cynthia Sinha, PhD⁶^*, Mohan Madisetti⁷^*, Jeanette Nu'man, MEd⁸^*, Hailly Butler, BSN, RN⁹^* and Keecilon Wright, BS⁸^*

¹Emory University Center for Digital Scholarship, Atlanta, GA
²University of Texas at Austin, Austin, TX
³Emory University/Children's Healthcare of Atlanta, Atlanta, GA
⁴Emory+ Childrens Healthcare of Atlanta Pediatrics Institute, Hurley Medical Center, Atlanta, GA
⁵Jiann-Ping Hsu College of Public Health, Georgia Southern University, Statesboro, GA
⁶Emory University School of Medicine, Atlanta
⁷Medical University of South Carolina, Charleston, SC
⁸Sickle Cell Foundation of Georgia, Atlanta, GA
⁹Department of Pathology, Emory University School of Medicine, Atlanta, GA

5006

Lapses in Appointment Attendance Among Children with Sickle Cell Disease in the First Five Years of Life

Grace Kalmus, MPH¹^*, Lindsey Abel, BS¹^*, Amy Tang, MD^1,2, Peter A. Lane, MD² and Beatrice E Gee, MD^1,2

¹Aflac Cancer and Blood Disorders Center, Children's Healthcare of Atlanta, Atlanta, GA
²Dept. of Pediatrics, Emory University School of Medicine, Atlanta, GA

5007

Prediction of Event Free Survival in Hematopoietic Cell Transplantation: A Machine Learning Clustering and Proximity Analysis

Rajagopal Subramaniam¹^*, Michael Kane, PhD²^* and Lakshmanan Krishnamurti, MD^1,3

¹Section of Pediatric Hematology/Oncology/BMT, Yale School of Medicine, New Haven, CT
²Biostatistics Department, Yale School of Public Health, New Haven,, CT
³Section of Pediatric Hematology/Oncology/BMT, Yale School of Medicine, Atlanta, GA

5008

Sctalk: A Pilot Trial Using Implementation Science to Improve Documentation and Disclosure of Sickle Cell Trait during Infancy

Corinna L. Schultz, MD, MSHP^1,2, Kelsey Higgins³^*, Alison Taggi Pinto, M.Ed.³^*, Morgan Thomas, MGC, CGC⁴^*, Melanie L Pitone, MD⁵^*, Judith Feinson, MPH⁵^*, Amanda M. Lewis, MPH³^*, Jobayer Hossain, PhD⁶^*, Kim Smith-Whitley, MD^7,8, Lewis L Hsu, MD, PhD⁹ and Melissa A. Alderfer, PhD^1,3^*

¹Department of Pediatrics, Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, PA
²Lisa Dean Moseley Foundation Institute for Cancer and Blood Disorders, Nemours Children's Health, Wilmington, DE
³Center for Healthcare Delivery Science, Nemours Children's Health, Wilmington, DE
⁴Children's Hospital of Philadelphia, Philadelphia, PA
⁵Center for Health Delivery Innovation, Nemours Children's Health, Wilmington, DE
⁶Nemours Children's Health, Wilmington, DE
⁷Division of Hematology, Children's Hospital of Philadelphia, Philadelphia, PA
⁸Pfizer, Inc., New York, NY
⁹Sickle Cell Center / Pediatric Hematology-Oncology, University of Illinois at Chicago, Chicago, IL

5009

Implementation of American Society of Hematology (ASH) Neuro-Related Guidelines at a Sickle Cell Center: How Are We Doing?

Jennifer A. Afranie-Sakyi, MD¹, Modupe Karimi²^*, Janis Bozzo, MSN, RN³^*, Joanna Cole, APRN, FNP-BC³^*, Layla N Van Doren, MD, MBA⁴ and Cecelia Calhoun, MD, MBA, MPH¹

¹Section of Hematology, Department of Internal Medicine, Yale School of Medicine, New Haven, CT
²Yale University, New Haven, CT
³Yale New Haven Health, New Haven, CT
⁴Section of Hematology, Division of Medicine, Yale School of Medicine, New Haven, CT

5010

Perception of Healthcare Utilization Among Individuals with Sickle Cell Disease: A Scoping Review

Christina Ruan, MSc^1,2^*, Joyce Gyamfi, MS, EdD³^*, Nana Osei-Tutu, MS³^*, Shreya Meda, BS³^*, Lydia Samuels³^*, Nousheen Inayat, BA³^*, Sukruthi Thunga, BA³^*, Elizabeth Noble, MSN, MPH³^*, Dorice L. Vieira, MLS, MA, MPH^4,5^* and Emmanuel Peprah, PhD³

¹New York University, Manhasset, NY
²Georgetown University Medical Center, Georgetown University, Washington DC, DC
³New York University, New York, NY
⁴New York University, NY, NY
⁵NYU Health Sciences Library, NYU Grossman School of Medicine, New York, NY

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^*signifies non-member of ASH