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Updated: Mar 18, 2026
A Precision Medicine Tool for Measurement and Monitoring of Hemoglobin S in Sickle Cell Disease Patients Receiving Transfusion Therapy
A validated measure of adherence to antibiotic prophylaxis in children with sickle cell disease
Natalie A Duncan1, William G Kronenberger2, Kisha C Hampton1
1Department of Hematology, Indiana Hemophilia and Thrombosis Center, Indianapolis, IN, USA.
Insights
A new tool, the Sickle Cell Antibiotic Adherence Level Evaluation (SCAALE), was developed to better measure antibiotic adherence in sickle cell disease patients. This validated tool aids in improving clinical care and research for better patient outcomes.
Area of Science:
- Pharmacology
- Pediatrics
- Health Services Research
Background:
- Antibiotic prophylaxis is crucial for managing sickle cell disease (SCD).
- Current adherence rates for antibiotic prophylaxis in SCD are suboptimal, estimated at only 66%.
- A need exists for a systematic and detailed method to evaluate adherence.
Purpose of the Study:
- To develop and validate the Sickle Cell Antibiotic Adherence Level Evaluation (SCAALE).
- To create a tool for systematic and detailed adherence evaluation in SCD.
- To enhance the assessment of antibiotic prophylaxis adherence.
Main Methods:
- A 28-item questionnaire was developed, assessing seven distinct adherence areas.
- Parental and healthcare provider adherence ratings were collected.
- Medication possession ratios were utilized as validation metrics.
Main Results:
- The SCAALE demonstrated very good to excellent internal consistency (Cronbach's alpha = 0.89).
- Strong correlations were observed between SCAALE scores and validation measures.
- The tool showed robust performance for overall adherence and five subscales.
Conclusions:
- The SCAALE offers a comprehensive, quantitative, and multidimensional measure of adherence.
- This validated tool can significantly advance clinical care for SCD patients.
- The SCAALE is poised to support future research in SCD adherence.
Background:
Antibiotic prophylaxis is a mainstay in sickle cell disease management. However, adherence is estimated at only 66%. This study aimed to develop and validate a Sickle Cell Antibiotic Adherence Level Evaluation (SCAALE) to promote systematic and detailed adherence evaluation.
Methods:
A 28-item questionnaire was created, covering seven adherence areas. General Adherence Ratings from the parent and one health care provider and medication possession ratios were obtained as validation measures.
Results:
Internal consistency was very good to excellent for the total SCAALE (α=0.89) and four of the seven subscales. Correlations between SCAALE scores and validation measures were strong for the total SCAALE and five of the seven subscales.
Conclusion:
The SCAALE provides a detailed, quantitative, multidimensional, and global measurement of adherence and can promote clinical care and research.
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