Sickle Cell Disease: Exploring treatment options and psychosocial care

Jointly planned by the National Marrow Donor Program/Be The Match and Sickle Cell Transplant Advocacy & Research Alliance (STAR)

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Description

Identifying individual risks, benefits and eligibility criteria for sickle cell disease treatment options including blood and marrow transplant and gene therapy is essential to helping patients and their families/caregivers make choices. Join our speakers who will share strategies for discussing participation in SCD clinical trials, addressing the psychosocial and financial concerns of treatment options, and using educational resources to facilitate shared decision-making.  

Learning Objectives

  • Describe treatment advances in BMT and emerging gene therapy for sickle cell disease, including patient eligibility, risks, benefits, and outcomes
  • Engage patients and families in clinical trial discussions to advocate for and identify options that reduce participation barriers 
  • Apply strategies to proactively identify and address psychosocial and financial concerns with treatment choices
  • Provide information to address the resource needs of patients and their family

The goal of this activity is to ensure that members of a multidisciplinary team have the knowledge and skills necessary to apply the standards of care to their practice and healthcare setting for patients with sickle cell disease.

Speakers 

Jennifer Krajewski, MD

Pediatric Hematologist-Oncologist
Hackensack University Medical Center
STAR Alliance Education Committee Co-Chair

Jennifer Krajewski, MD, is a Pediatric Hematologist-Oncologist at Hackensack University Medical Center. Dr. Krajewski also serves as the Co-Chair of Education/Outreach/Advocacy Committee for the Sickle Cell Transplant Alliance for Research (STAR).  

Timothy Olson, MD, PhD

Pediatric Hematologist-Oncologist
Children’s Hospital of Philadelphia

Timothy Olson, MD, PhD, is a Pediatric Hematologist-Oncologist at Children’s Hospital of Philadelphia where he focuses on pediatric hematopoietic cell transplantation (HCT), with a specific emphasis on HCT for patients with inherited and acquired bone marrow failure. 

YoungJae Lee, MSW LCSW

Licensed Clinical Social Worker 
Children’s Cancer Institute
Hackensack Meridian Health  

YoungJae Lee, MSW, LCSW, is a Licensed Clinical Social Worker at Children’s Cancer Institute Hackensack Meridian Health where she specializes in Pediatric Oncology and Hematology. 

Target Audience

Hematology, oncology and BMT nurses; hematology, oncology and BMT social workers at intermediate to advanced levels of practice, experience and licensure; transplant center coordinators; payer case managers and other allied health professionals.

Certification

Participants must complete and submit the evaluation for the activity in order to receive a certificate of completion. Certificates will be issued via email.

Questions?

If you have any questions regarding this activity or for assistance for people with disabilities, grievances, please email nmdpeducation@nmdp.org. 

References


1. Stallings AM, Majhail, NS, Nowacki AS, et al.  Parent and Guardian Knowledge of Hematopoietic Cell Transplantation as a Treatment Option for Sickle Cell Disease.  J Pediatr Hematol Oncol. 2019; 41(3): 187-193.
2. Rodgers GP and George A. Hydroxyurea use in sickle cell disease. UpToDate. Available at uptodate.com. Accessed March 27, 2019 
3. Shenoy S, Eapen M, Panepinto J, et al. A trial of unrelated donor marrow transplantation for children with sickle cell disease. Blood. 2016;128(21):2561-2567.
4. Khemani K, Ross D, Sinha C. et al. Experiences and Decision Making in Hematopoietic Stem Cell Transplant in Sickle Cell Disease:  Patient’s and Caregivers’ Perspectives. Biol Blood Marrow Transplant.  2018; 24(5): 1041-1048.
5.  Kapoor S, Little JA, Pecker LH.  Advances in the Treatment of Sickle Cell Disease.  Mayo Clinic Proc. 2019: 93(12): 1819-1824. 
6. Flocke S, Antognoli E, Daly BJ, et al. The Role of Oncology Nurses in Discussing Clinical Trials. Oncology Nursing Forum. 2017; 44(5) 547–552. 
7. Rolleri C. Clinical Trials and their financial barriers: Increasing participation, lowering financial toxicity. ASCO Connection. 2019, Jan 7. Available at:  https://connection.asco.org/magazine/features/clinical-trials-and-their-financial-barriers-increasing-participation-lowering Accessed March 27, 2019. 
8. Oktay JS, Kayser K, Lee HY, et al.  Promoting Research in Oncology Social Work: A White Paper from the Association of Oncology Social Work Post Conference Research Institute. Association of Oncology Social Work. 2016. Available at: http://www.aosw.org/AOSW/media/Main-Site-Files/Research/Documents/AOSW-Research-Institute-White-Paper-FINAL.pdf9 Accessed 3/27/19. 
9. PDQ® Adult Treatment Editorial Board. PDQ Financial Toxicity and Cancer Treatment. Bethesda, MD: National Cancer Institute. Available at: https://www.cancer.gov/about-cancer/managing-care/track-care-costs/financial-toxicity-hp-pdq. Accessed 3/27/2019.
10. Blevins Primeau AS. Financial Toxicity and Cancer. Cancer Therapy Advisor.  2018; Aug 2. Available at:  https://www.cancertherapyadvisor.com/home/tools/fact-sheets/financial-toxicity-and-cancer/2/  Accessed March 27, 2019. 
11. Bona K, London WB, Guo D, et al.  Prevalence and Impact of Financial Hardship among New England Pediatric Stem cell Transplantation Families.  Biol Blood Marrow Transplant. 2015; 21:312-318.