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Development of a Hydroxyurea Decision Aid for Parents of Children With Sickle Cell Anemia

Crosby, Lori E., PsyD*,†,‡; Walton, Ashley, BS*,§; Shook, Lisa M., MA†,∥; Ware, Russell E., MD, PhD†,∥; Treadwell, Marsha, PhD; Saving, Kay L., MD#,**; Britto, Maria, MD, MPH†,‡,††; Peugh, James, PhD*,†; McTate, Emily, PhD*,†; Oyeku, Suzette, MD, MPH‡‡; Nwankwo, Cara, BA*; Brinkman, William B., MD, MEd, MSc†,‡,§§

Journal of Pediatric Hematology/Oncology: January 2019 - Volume 41 - Issue 1 - p 56–63
doi: 10.1097/MPH.0000000000001257
Clinical and Laboratory Observations

National evidence-based guidelines recommend offering hydroxyurea to patients with sickle cell anemia 9 months of age and older using shared decision making, but offer no strategies to aid implementation. We developed a hydroxyurea multicomponent decision aid via a needs assessment, clinic observations, and iterative feedback to address parent decision needs and promote a discussion between clinicians and parents. A total of 75 parents and 28 clinicians participated across all phases. The decision aid was rated as useful. Hydroxyurea knowledge improved and decisional conflict decreased supporting the potential for use to facilitate shared decision making in pediatric sickle cell anemia.

Divisions of *Behavioral Medicine

Hematology

††Adolescent and Transition Medicine

§§General and Community Pediatrics

James M. Anderson Center for Health Systems Excellence, Cincinnati Children’s Hospital Medical Center

Department of Pediatrics, University of Cincinnati College of Medicine

§Department of Psychology, University of Cincinnati, Cincinnati, OH

Division of Pediatric Oncology, UCSF Benioff Children’s Hospital Oakland, Oakland, CA

#Children's Hospital of Illinois, OSF Saint Francis Medical Center

**Department of Pediatrics, University of Illinois College of Medicine at Peoria, Peoria, IL

‡‡Department of Pediatrics, Division of Academic General Pediatrics, Children’s Montefiore, Albert Einstein College of Medicine, Bronx, New York, NY

Supported in part by Agency for Healthcare Research and Quality’s (AHRQ) Centers for Education and Research in Therapeutics (CERTs) Grant number: 1U19HS021114. This project was also supported by the Health Resources and Services Administration (HRSA) Sickle Cell Disease Treatment Demonstration Program grant number: U1EMC27863. The Hemoglobinopathy Learning Collaborative was supported by funding from the Health Resources and Services Administration (HRSA) Sickle Cell Disease Treatment Demonstration Program Sickle Cell Disease Treatment Demonstration Program (HRSA Contract #HHSH25020100022C). The content is solely the responsibility of the authors and does not necessarily represent the official views of the AHRQ or HRSA.

The authors declare no conflict of interest.

Reprints: Lori E. Crosby, PsyD, Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children’s Hospital Medical Center, 3333 Burnet Avenue, MLC 7039, Cincinnati, OH 45229 (e-mail: lori.crosby@cchmc.org).

Received July 3, 2017

Accepted June 12, 2018

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