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An educational symposium for patients with sickle cell disease and their families: Results from surveys of knowledge and factors influencing decisions about hematopoietic stem cell transplant

Authors

  • Amanda L. Thompson PhD,

    1. Center for Cancer and Blood Disorders, Children's National Medical Center, Washington, District of Columbia
    2. Department of Pediatrics, The George Washington University Medical Center, Washington, District of Columbia
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  • Alexis Bridley MA,

    1. Center for Cancer and Blood Disorders, Children's National Medical Center, Washington, District of Columbia
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  • Eileen Twohy MA,

    1. Center for Cancer and Blood Disorders, Children's National Medical Center, Washington, District of Columbia
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  • Jackie Dioguardi PA,

    1. Center for Cancer and Blood Disorders, Children's National Medical Center, Washington, District of Columbia
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  • Jane Sande MD,

    1. Center for Cancer and Blood Disorders, Children's National Medical Center, Washington, District of Columbia
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    • Currently in Private Practice.
  • Lewis L. Hsu MD, PhD,

    1. Pediatric Hematology-Oncology, University of Illinois at Chicago, Sickle Cell Center, Chicago, Illinois
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  • Naynesh Kamani MD,

    1. Center for Cancer and Blood Disorders, Children's National Medical Center, Washington, District of Columbia
    2. Department of Pediatrics, The George Washington University Medical Center, Washington, District of Columbia
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  • Emily Riehm Meier MD

    Corresponding author
    1. Center for Cancer and Blood Disorders, Children's National Medical Center, Washington, District of Columbia
    2. Department of Pediatrics, The George Washington University Medical Center, Washington, District of Columbia
    • Correspondence to: Emily Riehm Meier, Center for Cancer and Blood Disorders, Children's National Medical Center, 111 Michigan Ave., NW, Washington, DC 20010.

      E-mail: emeier@childrensnational.org

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  • Conflict of interest: Nothing to declare.

ABSTRACT

Background

The only available cure for sickle cell disease (SCD) is hematopoietic stem cell transplant (HSCT). One important barrier to HSCT in SCD is lack of patient and family knowledge.

Procedure

To improve awareness of HSCT as a curative option for SCD, we hosted half-day educational symposia in 2011 and 2012. Symposia included didactic lectures by HSCT experts, small group sessions, and question and answer sessions with SCD patients and their families who had undergone HSCT. In 2011, we distributed anonymous pre- and post-symposium knowledge tests to determine how much attendees had learned about transplant. In 2012, we asked attendees to rate the importance of various medical and psychosocial factors in the decision to pursue HSCT.

Results

Results from 2011 showed that knowledge about HSCT increased significantly after the symposium. Concern about the risk of transplant decreased slightly, but not significantly, following the symposium, and the majority of attendees expressed a desire to speak with physicians further about HSCT. In 2012, families reported that risk of death, prevention of SCD complications, and risk of serious complications were the most important considerations for their decisions about HSCT.

Conclusions

A half-day symposium for SCD patients and their families can increase knowledge about HSCT. Education about risks and benefits of HSCT is key, as families consider these medical factors to be most important to their decision to pursue transplant. Our symposia can be replicated across the country to increase knowledge about HSCT for SCD and impact the number of patients who pursue HSCT. Pediatr Blood Cancer 2013;60:1946–1951. © 2013 Wiley Periodicals, Inc.

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