Literature DB >> 16651336

Sickle cell disease: a question of equity and quality.

Lauren A Smith1, Suzette O Oyeku, Charles Homer, Barry Zuckerman.   

Abstract

Thirty years ago, the first major federal legislation concerning sickle cell disease treatment was passed, resulting in the development of comprehensive sickle cell centers. We are now at another watershed moment in the treatment of this illness with the passage in October 2004 of the Sickle Cell Treatment Act, designed to substantially expand specialized sickle cell treatment programs. This legislation offers a remarkable opportunity to significantly improve health outcomes for individuals with sickle cell disease if it is implemented with a specific focus on the distinct but related issues of equity and quality. Despite major advances in sickle cell disease treatment that have occurred over the past 3 decades, important gaps exist both in the equity of government and private philanthropic support for research and in the uniform provision of high quality clinical care. This article assesses the current gaps in funding support and in the implementation of improvements in clinical care in order to suggest strategies for making optimal use of the opportunity that the new legislation presents to improve the health of all individuals affected by this disease.

Mesh:

Year:  2006        PMID: 16651336     DOI: 10.1542/peds.2005-1611

Source DB:  PubMed          Journal:  Pediatrics        ISSN: 0031-4005            Impact factor:   7.124


  40 in total

1.  Frequent red cell transfusions reduced vascular endothelial activation and thrombogenicity in children with sickle cell anemia and high stroke risk.

Authors:  Hyacinth I Hyacinth; Robert J Adams; Jenifer H Voeks; Jacqueline M Hibbert; Beatrice E Gee
Journal:  Am J Hematol       Date:  2013-11-28       Impact factor: 10.047

2.  CE: Understanding the Complications of Sickle Cell Disease.

Authors:  Paula Tanabe; Regena Spratling; Dana Smith; Peyton Grissom; Mary Hulihan
Journal:  Am J Nurs       Date:  2019-06       Impact factor: 2.220

3.  Evaluation and Treatment of Sickle Cell Pain in the Emergency Department: Paths to a Better Future.

Authors:  William T Zempsky
Journal:  Clin Pediatr Emerg Med       Date:  2010-12-01

4.  Stigma of Sickle Cell Disease: A Systematic Review.

Authors:  Dominique Bulgin; Paula Tanabe; Coretta Jenerette
Journal:  Issues Ment Health Nurs       Date:  2018-04-13       Impact factor: 1.835

5.  Use of the Spiritual Development Framework in Conducting Spirituality and Health Research with Adolescents.

Authors:  Dora Clayton-Jones; Kristin A Haglund; Jame Schaefer; Harold G Koenig; Safiya George Dalmida
Journal:  J Relig Health       Date:  2019-08

6.  Sickle cell disease--the American saga.

Authors:  Azfar-E-Alam Siddiqi; Lanetta B Jordan; Christopher S Parker
Journal:  Ethn Dis       Date:  2013       Impact factor: 1.847

7.  Newborn Screening Programs and Sickle Cell Disease: A Public Health Services and Systems Approach.

Authors:  Cynthia S Minkovitz; Holly Grason; Marjory Ruderman; James F Casella
Journal:  Am J Prev Med       Date:  2016-07       Impact factor: 5.043

Review 8.  Rigorous and practical quality indicators in sickle cell disease care.

Authors:  Suzette O Oyeku; Elissa Z Faro
Journal:  Hematology Am Soc Hematol Educ Program       Date:  2017-12-08

Review 9.  Systematic and Meta-Analytic Review: Medication Adherence Among Pediatric Patients With Sickle Cell Disease.

Authors:  Kristin Loiselle; Jennifer L Lee; Lauren Szulczewski; Sarah Drake; Lori E Crosby; Ahna L H Pai
Journal:  J Pediatr Psychol       Date:  2015-09-18

10.  Research to advance health and health care for individuals with sickle cell disease: a drop in the bucket of needed research.

Authors:  Diana J Wilkie
Journal:  J Adv Nurs       Date:  2016-04-08       Impact factor: 3.187

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