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

Lori E Crosby1,2,3, Ashley Walton1,4, Lisa M Shook2,5

  • 1Divisions of Behavioral Medicine.

Journal of Pediatric Hematology/Oncology
|July 26, 2018
PubMed

Insights

A new decision aid helps parents and doctors discuss hydroxyurea treatment for sickle cell anemia. This tool improves understanding and reduces uncertainty, supporting shared decision-making for children.

Area of Science:

  • Pediatric Hematology
  • Medical Decision Making
  • Health Informatics

Background:

  • National guidelines recommend hydroxyurea for sickle cell anemia (SCA) starting at 9 months.
  • Shared decision-making (SDM) is crucial for SCA treatment, but implementation strategies are lacking.
  • Parents need support to make informed decisions about hydroxyurea therapy.

Purpose of the Study:

  • To develop and evaluate a multicomponent decision aid for hydroxyurea in pediatric SCA.
  • To address parent information needs and facilitate clinician-parent discussions regarding hydroxyurea.
  • To support the implementation of SDM in SCA management.

Main Methods:

  • Needs assessment, clinic observations, and iterative feedback from parents and clinicians.
  • Development of a hydroxyurea multicomponent decision aid.
  • Evaluation of the decision aid's usefulness, impact on knowledge, and decisional conflict.

Main Results:

  • 75 parents and 28 clinicians participated in the development and evaluation.
  • The hydroxyurea decision aid was rated as useful by participants.
  • Hydroxyurea knowledge significantly improved, and decisional conflict decreased post-intervention.

Conclusions:

  • The developed decision aid effectively addresses parent needs in pediatric SCA.
  • The tool shows potential to facilitate shared decision-making for hydroxyurea therapy.
  • Implementation of decision aids can improve understanding and confidence in SCA treatment choices.

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