Hydroxyurea therapy for children with sickle cell disease: Describing how caregivers make this decision

被引：13

作者：

Creary S. ^{[1
]}

Zickmund S. ^{[2
]}

Ross D. ^{[3
]}

Krishnamurti L. ^{[3
]}

Bogen D.L. ^{[4
]}

机构：

[1] Division of Hematology-Oncology, Nationwide Children's Hospital, Ohio State University, 700 Children's Drive Columbus, Columbus, 43205, OH

[2] Department of Internal Medicine, University of Pittsburgh, Pittsburgh, PA

[3] Division of Hematology/Oncology/BMT, Emory University School of Medicine, Atlanta, 30322, GA

[4] Division of General Academic Pediatrics, Children's Hospital of Pittsburgh, University of Pittsburgh School of Medicine, Pittsburgh

来源：

BMC Research Notes | / 8卷 / 1期

基金：

美国国家卫生研究院;

关键词：

Decision making; Hydroxyurea; Qualitative research; Sickle cell;

D O I：

10.1186/s13104-015-1344-0

中图分类号：

学科分类号：

摘要：

Background: Hydroxyurea (HU) is underutilized in children with sickle cell disease (SCD) because caregivers frequently decline HU when it is offered. This study explores what impacts this decision. Results: Caregivers of children with clinically severe SCD whose children were offered HU previously were interviewed. We used a qualitative analytical approach to analyze their telephone interview transcripts. Caregivers who chose HU (n = 9) reported their children had severe SCD, sought detailed information about HU, and accepted HU as a preventative therapy. In contrast, caregivers who did not choose HU (n = 10) did not perceive their children as having severe SCD and did not question their child's provider about HU. Conclusions: This study identifies specific areas that providers should address to when they discuss HU with families so that they can make informed decisions. Our study also uncovered factors that are important to consider when designing future interventions to improve hydroxyurea acceptance and when developing decision-aid tools to assist caregivers of children with SCD who are considering disease modifying therapies. © 2015 Creary et al.

引用

共 19 条

[1]

Platt O.S., Brambilla D.J., Rosse W.F., Et al., Mortality in sickle cell disease: Life expectancy and risk factors for early death, N Eng J Med, 330, pp. 1639-1644, (1994)

[2]

Disease and Conditions Index: Sickle Cell Anemia: Who Is at Risk?

[3]

Hankins J., Hinds P., Day S., Et al., Therapy preference and decision-making among patients with severe sickle cell anemia and their families, Pediatr Blood Cancer, 48, pp. 705-710, (2007)

[4]

Wang W.C., Ware R.E., Miller S.T., Et al., Hydroxycarbamide in very young children with sickle-cell anaemia: A multicentre, randomised, controlled trial (BABY HUG), Lancet, 377, pp. 1663-1672, (2011)

[5]

Hankins J.S., Ware R.E., Rogers Z.R., Et al., Long-term hydroxyurea therapy for infants with sickle cell anemia: The HUSOFT extension study, Blood, 106, pp. 2269-2275, (2005)

[6]

Yawn B.P., Buchanan B.R., Afenyi-Annan A.N., Et al., Management of sickle cell disease: Summary of the 2014 evidence-Based report by expert panel members, JAMA, 312, pp. 1033-1048, (2014)

[7]

Zumberg M.S., Reddy S., Boyette R.L., Et al., Hydroxyurea therapy for sickle cell disease in community-based practices: A survey of Florida and North Carolina hematologists/oncologists, Am J Hematol, 79, pp. 107-113, (2005)

[8]

Lanzkron S., Haywood C., Hassell K.L., Et al., Provider barriers to hydroxyurea use in adults with sickle cell disease: A survey of the sickle cell disease adult provider network, J Natl Med Assoc, 100, pp. 968-973, (2008)

[9]

Haywood C., Beach M.C., Bediako S., Et al., Examining the characteristics and beliefs of hydroxyurea users and nonusers among adults with sickle cell disease, Am J Hematol, 86, pp. 85-87, (2011)

[10]

Oyeku S.O., Driscoll M.C., Cohen H.W., Trachtman R., Et al., Parental and other factors associated with hydroxyurea use for pediatric sickle cell disease, Pediatr Blood Cancer, 60, pp. 653-658, (2013)

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