Results Summary

What was the research about?

In sickle cell disease, or SCD, red blood cells change shape and block blood flow, causing pain and damage to the body. Hydroxyurea is a medicine that helps keep red blood cells healthy and reduces pain and damage from SCD. But some people may have side effects or other problems when taking this medicine.

National guidelines recommend using shared decision making, or SDM, to discuss treatment with hydroxyurea. SDM helps patients and clinicians, like doctors and nurses, make decisions about treatment together.

In this study, the research team compared two ways to support SDM use:

  • SDM program. Clinics received training in communication and SDM. Parents received four decision aids. Decision aids help people choose between two or more healthcare options based on what is most important to them. The decision aids were two small booklets about the medicine, an information card, and a video. In the video, other parents talk about how they made their choice about the medicine.
  • Clinician guide. Clinics received current guidelines and a pocket guide for offering hydroxyurea to parents of children with SCD. The guidelines recommended using SDM.

The research team compared parents’ uncertainty about making choices about using hydroxyurea between the two groups.

What were the results?

After three months, the two groups didn’t differ in:

  • How uncertain parents were about making a choice about using hydroxyurea
  • How satisfied parents felt about their decision
  • The level of SDM parents had with their child’s clinician
  • How parents felt about their child’s health care or health and well-being

In both groups, parents had less uncertainty about their decision.

Compared with the SDM group, parents in the clinician guide group:

  • Had more problems talking about their child’s SCD pain with clinicians
  • Were more likely to be offered hydroxyurea (81 percent versus 59 percent)
  • Were more likely to receive hydroxyurea (48 percent versus 40 percent)

Who was in the study?

The study included 146 parents of children ages 0–5 with SCD. Children received care from eight SCD clinics across the United States. Among parents, 89 percent were Black, 1 percent were White, 1 percent were Asian, 6 percent were more than one race, and 2 percent were another race. The average age was 30, and 93 percent were women.

What did the research team do?

The research team assigned clinics to receive the clinician guide for at least six months; the clinics then started the SDM program. Parents completed surveys when making a decision about hydroxyurea and again three months later.

Patients, caregivers, clinicians, and community-based organizations helped design the study.

What were the limits of the study?

The research team had trouble recruiting parents, which led to delays in the study. The COVID-19 pandemic caused more recruitment challenges. As a result, the team couldn’t assign clinics by chance to the two groups as planned.

Future research could assign clinics by chance to the two ways to help parents make decisions about hydroxyurea.

How can people use the results?

Clinics can use results when considering ways to support SDM about treatments for SCD.

Final Research Report

This project's final research report is expected to be available by September 2024.

Peer-Review Summary

The Peer-Review Summary for this project will be posted here soon.

Conflict of Interest Disclosures

Project Information

Lori E. Crosby, PsyD
Cincinnati Children's Hospital Medical Center
$1,996,454
Engaging Parents of Children with Sickle Cell Anemia and their Providers in Shared-Decision Making for Hydroxyurea

Key Dates

August 2017
February 2023
2017
2023

Study Registration Information

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Last updated: March 14, 2024