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Development and evaluation of a sickle cell assessment instrument
1Division of Hematology, St. Jude Children's Research Hospital, Memphis, TN, USA.
Insights
A new Sickle Cell Disease Assessment Instrument helps nurses identify children at high risk for severe complications, enabling personalized treatment plans. This tool ensures accurate risk assessment for better patient outcomes.
Area of Science:
- Pediatric Hematology
- Clinical Assessment Tools
- Sickle Cell Disease Management
Background:
- Accurate prediction of severe complications in young children with sickle cell disease is crucial for tailored therapy.
- A validated assessment instrument is needed for objective risk evaluation before high-risk treatments.
Purpose of the Study:
- To develop and evaluate the validity and reliability of a Sickle Cell Disease Assessment Instrument.
- The instrument features two domains: high-risk identification and disease severity classification.
Main Methods:
- Instrument development involved defining critical attributes and creating a scoring system.
- Content validity was assessed by sickle cell disease experts.
- Interrater reliability and stability were determined by registered nurses using equivalence and test-retest designs.
Main Results:
- The study successfully developed a Sickle Cell Disease Assessment Instrument.
- The instrument demonstrated content validity, interrater reliability, and stability.
- It provides nurses with an objective tool for patient assessment.
Conclusions:
- The developed instrument enables accurate and objective assessment of high-risk indicators and disease severity in sickle cell disease patients.
- This tool supports nurses in identifying patients needing additional intervention.
- It facilitates precise tailoring of therapy based on individual disease risks.
Abstract:
The current ability to predict very young children with sickle cell disease who are likely to have severe complications later in life permits accurate tailoring of therapy to match disease-related risks. A valid and reliable instrument is essential to accurately assess these children prior to referring them to therapies that are not without risk. This study was designed to develop a Sickle Cell Disease Assessment Instrument with two domains-high-risk identification and disease severity classification-and to evaluate instrument validity and reliability. Instrument development involved identification and definition of critical attributes, assignment of numerical values to critical attributes, and development of a scoring system. Content validity was measured using a panel of five experts in the field of sickle cell disease. Registered nurses using the equivalence approach determined interrater reliability and using test-retest design determined stability. Nurses are often the first persons to identify sickle cell patients that need additional intervention. This instrument will allow them to accurately and objectively assess their patients for high-risk indicators and disease severity classification.