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Updated: Sep 2, 2025

A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
Tailored Parenting Plans of Young Adults With Sickle Cell Disease or Sickle Cell Trait
Anne O Oguntoye1, Nyema T Eades, Dalal Aldossary
1Author Affiliations: College of Nursing, University of Florida (Drs Oguntoye, Eades, Ezenwa, Johnson-Mallard, Yao, and Wilkie; Mrs Aldossary, Ms Kuenzli, and Mrs Gehling), Gainesville; and College of Nursing, University of Illinois at Chicago (Dr Gallo).
Abstract:
Our study purpose was to evaluate the variation and accuracy of tailored parenting plans individually generated as a supplement to reproductive health education on the genetic inheritance of sickle cell disease or sickle cell trait. We present a secondary data analysis of experimental group data from a randomized controlled trial. Participants completed the valid and reliable Internet-based Sickle Cell Reproductive Health Knowledge Parenting Intent Questionnaire. We created a computerized algorithm that used participants' responses to generate tailored parenting plans based on their parenting preferences and partner's sickle cell status. Thirty-one different parenting plans were generated to meet the variety in the participants' preferences. The most frequently generated plan was for participants with sickle cell disease who had a partner with hemoglobin AA, who wanted to be a parent, was not likely to be pregnant, and wanted their child to be sickle cell disease free. More than half of the participants required alteration in their reproductive behavior to achieve their parenting goals. Findings provide insight into the variety and accuracy of computer algorithm-generated parenting plans, which could further guide refinement of the algorithm to produce patient-centered, tailored parenting plans supplemental to Internet-based genetic inheritance education.
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