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A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy

A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy

Acceptability to and Engagement With a Virtual Sickle Cell Trait Education Program (SCTaware): Single-Center

Chase M Beeman¹, Mary Ann Abrams^1,2, Kristin N Zajo³

¹Center for Child Health Equity and Outcomes Research, Nationwide Children's Hospital, The Ohio State University, Columbus, OH, United States.

JMIR Formative Research

|November 17, 2022

Summary

This summary is machine-generated.

The SCTaware videoconference program is an acceptable and engaging way to educate parents about sickle cell trait (SCT). This virtual format significantly reduced parental worry compared to telephone-only education.

Keywords:

Hemoglobin S-trait acceptability child digital health eHealth genetic health education hematology internet-based newborn parenting patient education public health education remote education screening sickle cell sickle cell trait telehealth telemedicine virtual education

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Area of Science:

Public Health
Genetics Education
Telehealth

Background:

Public health programs aim to educate communities, but learner acceptability of various delivery platforms (in-person, virtual, telephone) is not well-established.
Sickle cell trait (SCT) education for parents is a key public health initiative.
The COVID-19 pandemic prompted a shift from in-person to telephone-only SCT education, necessitating the development of new virtual formats like SCTaware.

Purpose of the Study:

To evaluate the acceptability and engagement of the SCTaware videoconference education program for parents of children with SCT.
To assess the impact of SCTaware on parental worry regarding their child's SCT diagnosis.

Main Methods:

A prospective, single-center study involving English-speaking parents of children under 3 years old diagnosed with SCT via newborn screening.
Participants had previously received telephone-based SCT education and were eligible if they had a device for videoconferencing.
Surveys were administered to parents post-SCTaware education, and an educator assessed participant engagement. A McNemar test compared pre- and post-education worry levels.

Main Results:

55 parents completed the study, with most finding SCTaware content and visuals easy to understand and conducive to conversation.
All participants found the visuals respectful, trustworthy, and helpful for understanding, with 62% reporting the visuals felt personal.
Educator-reported engagement was high, and SCTaware significantly reduced parental worry (P<.001) compared to telephone-only education.

Conclusions:

The SCTaware videoconference program is an acceptable and engaging educational tool for parents of children with SCT.
While telephone education offers accessibility, it may leave parents with significant worry.
Further research is underway to determine SCTaware's effectiveness in closing parental knowledge gaps regarding SCT.