66th ASH Annual Meeting: 904. Outcomes Research: Hemoglobinopathies: Non-Malignant Conditions: Transforming Care: Insights into Healthcare Utilization, Outcome Measurement, and Treatment Impact in Sickle Cell Disease

Symposia: Outcomes Research: Hemoglobinopathies Oral and Poster Abstracts
Oral

Research, Sickle Cell Disease, Adult, Epidemiology, Clinical Practice (Health Services and Quality), Bone Marrow Failure Syndromes, Clinical Research, Health outcomes research, Aplastic Anemia, Thalassemia, Hemoglobinopathies, Pediatric, Health disparities research, Patient-reported outcomes, Diseases, Young adult , Study Population, Human

Room 6DE (San Diego Convention Center)

Moderators:

Cecelia Calhoun, MD, MBA, MPH, and Jerlym Porter, PhD, MPH,

Disclosures:

No relevant conflicts of interest to declare.

This session will explore predictors of healthcare utilization, transplant and intervention outcomes and a novel approach to stress measurement in sickle cell disease

4:30 PM

1063

Predictors of Graft Failure Beyond 24 Months Following Hematopoietic Stem Cell Transplantation for Sickle Cell Disease

Priyanshi Maurya¹^*, Jingchen Liang, M.S²^*, Daniel Prior, M.D¹^*, Sai Prasad Ramachandran, MBBS¹^*, Yanhong Deng, M.S³^* and Lakshmanan Krishnamurti, MD¹

¹Section of Pediatric Hematology/Oncology/BMT, Yale School of Medicine, New Haven, CT
²Yale Center for Analytical Sciences, Yale School of Publich Health, New Haven, CT
³Yale Center for Analytical Sciences, Yale School of Public Health, New Haven, CT

4:45 PM

1064

Defining the Impacts of Iron Overload in Children Receiving Hematopoietic Stem Cell Transplantation for Non-Malignant Hematologic Disorders: A Multicenter Analysis

Nora M. Gibson, MD¹, Sandra Amaral, MD, MHS²^*, Jesse Y Hsu, PhD³^*, Nhat Nguyen, PhD⁴^*, Meghan Haney, MD, PhD⁵^*, Katelyn E Heimbruch, MD, PhD⁶^*, Anthony Sabulski, MD⁷, Kimberly Ann Davidow, MD⁸, Katherine Lind, MD⁹^*, Samantha Scanlon, MD¹⁰, Heather Alva, MD¹¹^*, L. Charles Bailey, MD, PhD¹²^*, Timothy S. Olson, MD, PhD¹³ and Janet L. Kwiatkowski, MD^14,15

¹Department of Pediatrics, Children's Hospital of Philadelphia, Philadelphia, PA
²Department of Pediatrics, Division of Nephrology, Children's Hospital of Philadelphia, Philadelphia, PA
³Department of Biostatistics, Epidemiology and Informatics, University of Pennsylvania Perelman School of Medicine, Philadelphia, PA
⁴Applied Clinical Research Center, Children's Hospital of Philadelphia, Philadelphia, PA
⁵Department of Pediatrics, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
⁶Department of Pediatrics, Cincinnati Children's Hospital, Cincinnati, OH
⁷University of Cincinnati College of Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
⁸Lisa Dean Mosely Foundation Institute for Cancer and Blood Disorders, Nemours Children's Health - Delaware, Philadelphia, PA
⁹Children's Hospital Colorado, Aurora, CO
¹⁰Seattle Children's Hospital, Seattle, WA
¹¹Department of Pediatrics, Division of Hematology, Oncology, Stem Cell Transplantation, and Regenerative Medicine, Lucile Packard Children's Hospital at Stanford University, Palo Alto, CA
¹²Department of Pediatrics, Division of Oncology, Children's Hospital of Philadelphia, Philadelphia, PA
¹³Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA
¹⁴Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA
¹⁵Children's Hospital of Philadelphia, Philadelphia, PA

5:00 PM

1065

Sickle Cell Disease-Related Worry and Associations with Healthcare Utilization in Youth with Sickle Cell Disease

Alex Pizzo, MSc¹^*, Guolian Kang, PhD², Victoria Okhomina, MSc²^*, Jerlym Porter, PhD, MPH³, Jason Hodges, PhD⁴, Parul Rai, MD, MBBS⁴, Clifford M. Takemoto, MD⁵, Jane S Hankins, MD, MS⁶ and Nicole M. Alberts, PhD⁷^*

¹Department of Psychology, Concordia University, Montreal, QC, Canada
²Department of Biostatistics, St. Jude Children's Research Hospital, Memphis, TN
³Department of Psychology and Biobehavioral Sciences, St. Jude Children's Research Hospital, Memphis, TN
⁴Department of Hematology, St. Jude Children's Research Hospital, Memphis, TN
⁵St. Jude Children's Research Hospital, Memphis, TN
⁶Department of Global Pediatric Medicine, St. Jude Children's Research Hospital, Memphis, TN
⁷Concordia University, Montreal, QC, Canada

5:15 PM

1066

Community Health Worker and Mobile Health Programs to Help Young Adults with Sickle Cell Disease Transition to Using Adult Healthcare Services -- the Comets Study; Results from Patient-Reported Outcomes at 6 Months

Sophia Jan¹^*, Caren Steinway, LMSW MPH²^*, Tanisha Belton, DrPH³^*, Justine Shults, PhD⁴^*, Laura Bennett, PhD, MPH³^*, Heather Griffis, MS PhD³^*, Banu Aygun, MD⁵, Abena Appiah-Kubi, MD, MPH⁶, Nataly Apollonsky, MD⁷^*, Donna Boruchov, MD⁸^*, Omar Niss, MD⁹, Lisa A. Schwartz, PhD¹⁰^*, Lori E. Crosby, PsyD¹¹, Lamia Barakat, PhD³^*, Biree Andemariam, MD¹², David Rubin, MD MSCE¹³^* and Kim Smith-Whitley, MD¹⁴

¹Northwell health, New Hyde Park, NY
²Northwell Health, New Hyde Park, NY
³Children's Hospital of Philadelphia, Philadelphia, PA
⁴Children's Hospital of Philadelphia, Philadelphia
⁵Division of Pediatric Hematology/Oncology and Cellular Therapy, Cohen Children's Medical Center, New Hyde Park, NY
⁶Cohen Children's Medical Center, Cohen Children's Medical Center, New Hyde Park, NY
⁷St. Christopher's Hospital for Children, Philadelphia, PA
⁸Connecticut Children's Medical Center, Hartford, CT
⁹Hematology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
¹⁰Division of Oncology, Children's Hospital of Philadelphia, Philadelphia, PA
¹¹Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
¹²University of Connecticut Health, West Hartford, CT
¹³University of California, Oakland, CA
¹⁴Division of Hematology, Children's Hospital of Philadelphia, Philadelphia, PA

5:30 PM

1067

Acceptability and Feasibility of Salivary Stress Research with Adolescents and Young Adults with Sickle Cell Disease

Kemar V. Prussien, PhD^1,2, Lori E. Crosby, PsyD³, Margaret Mary Burke, MS⁴^*, Rosalind J. Wright, MD, MPH⁵^*, Alexis Thompson, MD, MPH^1,2 and Lisa A. Schwartz, PhD^2,4^*

¹Division of Hematology, Children's Hospital of Philadelphia, Philadelphia, PA
²Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA
³Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH
⁴Division of Oncology, Children's Hospital of Philadelphia, Philadelphia, PA
⁵Icahn School of Medicine at Mount Sinai, New York, NY

5:45 PM

1068

A Holistic Approach to Sickle Cell Disease Severity Using Patient-Reported Outcomes

Caterina P. Minniti, MD¹, Ashley Buscetta^2,3^*, Hasmin C. Ramirez, MPH³^*, Diba Seddighi³^*, Nicole Farmer, MD⁴^* and Vence L. Bonham, JD³

¹Department of Hematology, Einstein College of Medicine, Chevy Chase, MD
²NHGRI, NIH, Bethesda, MD
³NHGRI, National Institutes of Health, Bethesda, MD
⁴Clinical Center, Translational Behavioral and Health Disparities (TBHD), National Institutes of Health, Bethesda, MD

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^*signifies non-member of ASH

904.O2.6 904. Outcomes Research: Hemoglobinopathies: Non-Malignant Conditions: Transforming Care: Insights into Healthcare Utilization, Outcome Measurement, and Treatment Impact in Sickle Cell Disease