Related Experiment Video
Updated: May 23, 2025
A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
Engaging Parents of Children With Sickle Cell Disease in Shared Decision-Making for Hydroxyurea: The ENGAGE-HU Study
Aimee K Hildenbrand1,2,3, Constance A Mara4, Bridget Murphy4
1Center for Healthcare Delivery Science, Nemours Children's Health, Wilmington, Delaware, USA.
Insights
The Hydroxyurea Shared Decision-Making (H-SDM) toolkit did not significantly improve decisional uncertainty or knowledge in parents of children with sickle cell disease (SCD). However, it was associated with lower rates of hydroxyurea being offered and prescribed.
Area of Science:
- Pediatric Hematology
- Clinical Decision-Making
- Public Health
Background:
- Guidelines recommend early hydroxyurea for children with sickle cell disease (SCD) via shared decision-making.
- The Hydroxyurea Shared Decision-Making (H-SDM) toolkit was developed to aid clinicians in this process.
- The study evaluated the toolkit's impact on parental decisional uncertainty, perceptions, knowledge, and hydroxyurea uptake.
Purpose of the Study:
- To assess the effectiveness of the H-SDM toolkit in improving parental engagement in hydroxyurea decisions.
- To evaluate the toolkit's influence on decisional uncertainty, shared decision-making perceptions, and hydroxyurea knowledge.
- To determine the impact of the H-SDM toolkit on the likelihood of hydroxyurea being offered and prescribed to children with SCD.
Main Methods:
- A crossover design was used, with sites initially in a usual care condition (clinician pocket guide) before switching to the H-SDM toolkit.
- Caregivers of children aged 0-5 years with SCD eligible for hydroxyurea completed assessments at baseline, post-discussion, and 3-7 months later.
- Data were collected between 2018 and 2022, with a significant portion of toolkit participants enrolled during the COVID-19 pandemic.
Main Results:
- No significant differences were found in parent decisional uncertainty, shared decision-making perceptions, or hydroxyurea knowledge between the usual care and H-SDM toolkit conditions.
- Parents in the usual care group reported higher decisional uncertainty compared to the toolkit group.
- A higher proportion of participants in the usual care group were offered (80.7%) and prescribed (48.2%) hydroxyurea compared to the toolkit group (58.7% offered, 39.7% prescribed).
Conclusions:
- The H-SDM toolkit may enhance parental confidence in decisions regarding hydroxyurea.
- The COVID-19 pandemic impacted study implementation, necessitating further exploration of hydroxyurea uptake.
- The toolkit might be most beneficial in clinical settings not routinely employing shared decision-making for hydroxyurea discussions.
Background:
Guidelines recommend that hydroxyurea be offered to children with sickle cell disease (SCD) as early as 9 months of age using shared decision-making. To help clinicians implement shared decision-making with parents, we developed the Hydroxyurea Shared Decision-Making (H-SDM) toolkit. We evaluated its effectiveness on parent decisional uncertainty, perceptions of shared decision-making, hydroxyurea knowledge, and the likelihood of being offered and prescribed hydroxyurea.
Procedure:
Sites began in the usual care condition (clinician pocket guide) before crossing over to the H-SDM toolkit condition between 2018 and 2022. Caregivers of children with SCD (birth to 5 years) eligible for hydroxyurea completed assessments at baseline, immediately after discussing hydroxyurea with their clinician, and 3-7 months later.
Results:
Participants included 176 caregivers (93.2% female, 89% Black); most toolkit participants were enrolled during the pandemic (n = 81). There were no statistically significant differences between conditions on parent decisional uncertainty, perceptions of shared decision-making, or hydroxyurea knowledge (p-values >0.05). However, there was a clinically important difference in certainty, with higher decisional uncertainty in the usual care group. A greater proportion of participants enrolled during usual care were offered (80.7%) and prescribed hydroxyurea (48.2%), compared to 58.7% offered and 39.7% prescribed during the toolkit condition (p-values ≤0.01).
Conclusions:
Findings suggest the toolkit may help parents feel more confident in deciding about hydroxyurea. Given the significant impacts of the COVID-19 pandemic on study implementation, the impact on hydroxyurea uptake requires additional exploration. Ultimately, the H-SDM toolkit may be most beneficial for clinics that do not routinely use a shared decision-making process for those considering hydroxyurea.
More Related Videos
Related Concept Videos
01:27Nursing Ethical Principles II
Consider the following scenario, which illustrates how these principles are applied in the care of Mr. John, a fifty-year-old teacher diagnosed with metastatic liver cancer.
Initially, Mr. John's...
01:30Ethical Dilemmas II
01:27Ethical Issues
Ethical Concerns in Healthcare:
01:22iPS Cell Differentiation
01:29Documentation in Long-Term and Home Healthcare Setting
Long-Term Care Facilities
01:17Ethical Dilemmas I
Let us explore some examples to understand the potentially complex moral decisions nurses face.
Take the case of caring for minors, particularly in areas related to reproductive...