Parent and Guardian Knowledge of Hematopoietic Cell Transplantation as a Treatment Option for Sickle Cell Disease

Journal of Pediatric Hematology/oncology
Alicia M StallingsConnie M Piccone

Abstract

Beginning early in childhood, patients with sickle cell disease (SCD) are at risk of life-threatening and debilitating health events. Despite the high morbidity and mortality of this disease, hematopoietic cell transplantation (HCT), a curative treatment for SCD, remains underutilized. In the literature there is a paucity of data concerning medical decision maker (MDM) awareness of HCT as a treatment option for SCD. The objective of this study was to estimate the proportion of parents/guardians of children with SCD who are aware of HCT as a treatment option, and to identify the demographic factors associated with knowledge of this therapy's curative potential. Between November 2015 and December 2016, 327 parents/guardians were surveyed across 4 clinical sites in 3 Midwestern US cities. Although 82% of parents/guardians had heard of HCT in the past and 78% were aware of the therapy's curative potential, nearly half indicated that they did not know whether HCT could specifically cure their child of the disease. Respondents who had discussed HCT with their child's physician had 5 times higher odds of being aware of HCT's curative potential than those who had not. These findings suggest that additional efforts to enhance MDM knowle...Continue Reading

References

Oct 19, 2001·Bone Marrow Transplantation·K van BesienE Kodish
Feb 7, 2004·Blood·Charles T QuinnGeorge R Buchanan
Sep 1, 2005·Health and Quality of Life Outcomes·Donna K McClishWally R Smith
Nov 24, 2006·The Journal of School Nursing : the Official Publication of the National Association of School Nurses·Sara Day, Elisabeth Chismark
Mar 3, 2010·Blood·Charles T QuinnGeorge R Buchanan
Apr 2, 2010·American Journal of Preventive Medicine·Kathryn L Hassell
Mar 2, 2013·Public Health Reports·Sophie LanzkronCarlton Haywood
Mar 19, 2014·Journal of Pediatric Hematology/oncology·Bethany MiklesNancy S Green
Jul 24, 2014·The New England Journal of Medicine·Loren GragertMartin Maiers
Jul 25, 2014·JAMA : the Journal of the American Medical Association·Matthew M HsiehJohn F Tisdale
Dec 3, 2014·Hematology/oncology Clinics of North America·Courtney D FitzhughMatthew M Hsieh
Jan 7, 2015·Biology of Blood and Marrow Transplantation : Journal of the American Society for Blood and Marrow Transplantation·Monica BhatiaStephen Sands
Jan 24, 2015·Biology of Blood and Marrow Transplantation : Journal of the American Society for Blood and Marrow Transplantation·Staci D ArnoldPrakash Satwani
Oct 27, 2015·Biology of Blood and Marrow Transplantation : Journal of the American Society for Blood and Marrow Transplantation·Mark C WaltersEffie Petersdorf
Mar 24, 2016·Seminars in Hematology·Feras AlfraihAdetola A Kassim
Dec 15, 2016·Blood·Eliane GluckmanUNKNOWN Eurocord, the Pediatric Working Party of the European Society for Blood and Marrow Transplantation, and the Center for Inter

❮ Previous
Next ❯

Software Mentioned

RedCap

Related Concepts

Related Feeds

Allogenic & Autologous Therapies

Allogenic therapies are generated in large batches from unrelated donor tissues such as bone marrow. In contrast, autologous therapies are manufactures as a single lot from the patient being treated. Here is the latest research on allogenic and autologous therapies.

Anemia

Anemia develops when your blood lacks enough healthy red blood cells. Anemia of inflammation (AI, also called anemia of chronic disease) is a common, typically normocytic, normochromic anemia that is caused by an underlying inflammatory disease. Here is the latest research on anemia.

Blood And Marrow Transplantation

The use of hematopoietic stem cell transplantation or blood and marrow transplantation (bmt) is on the increase worldwide. BMT is used to replace damaged or destroyed bone marrow with healthy bone marrow stem cells. Here is the latest research on bone and marrow transplantation.

Related Papers

American Journal of Obstetrics and Gynecology
Margaret S VillersAndra H James
The Journal of Alternative and Complementary Medicine : Research on Paradigm, Practice, and Policy
Erica M S SibingaModena H Wilson
Academic Emergency Medicine : Official Journal of the Society for Academic Emergency Medicine
Jeffrey A GlassbergMichael R Debaun
© 2022 Meta ULC. All rights reserved