Preventive Care for Children at Risk of Hemophilia
Children aged 0-13 years with a family history of Hemophilia or positive genetic testing for Hemophilia who receive preventive care to manage the risk of bleeding complications
Concept Population for Preventive Care for Children at Risk of Hemophilia
The target population for this eCQM includes children aged 0-13 years who are at risk of developing Hemophilia. The focus is on early identification and preventive care based on genetic risk factors and family history.
Key Criteria for Identifying the Population:
- Age: Children aged 0-13 years.
- Family History:
- Children with a documented family history of Hemophilia, including mothers who are carriers or male relatives diagnosed with Hemophilia.
- Genetic Testing:
- Children with positive genetic test results indicating carrier status or at-risk for Hemophilia.
Population Breakdown:
- Initial Population: All children aged 0-13 years within the healthcare system.
- Denominator: Children from the initial population with a family history of Hemophilia or positive genetic test results.
- Numerator: At-risk children who have received preventive care measures within the measurement period, such as prophylactic clotting factor infusions, preventive medications, or preventive care counseling.
- Exclusions: Children with severe liver disease or other contraindicating conditions.
Objective:
To ensure timely and appropriate preventive care for at-risk children to manage and mitigate the risk of severe bleeding complications associated with Hemophilia, improving their health outcomes and quality of life. Early intervention aims to reduce the frequency and severity of bleeding episodes through comprehensive preventive strategies.
Importance of Early Identification and Preventive
Care
Hemophilia is a genetic disorder that can lead to severe bleeding episodes, particularly in young children who are still growing and developing. Early identification of children at risk through family history and genetic testing allows healthcare providers to implement preventive strategies. These strategies are critical for reducing the risk of severe and potentially life-threatening bleeding complications.
Preventive Strategies and Their Benefits
- Prophylactic Treatment: Regular administration of clotting factor concentrates can significantly reduce the frequency and severity of bleeding episodes. This preventive treatment is especially important for children, as it can prevent joint damage and other long-term complications.
- Preventive Counseling and Education: Educating parents and caregivers about the signs of bleeding and the importance of early intervention can help in managing the condition effectively. Counseling can also provide strategies for safe physical activities and emergency management plans.
- Regular Monitoring: Continuous monitoring of at-risk children ensures that any early signs of complications are detected and addressed promptly. This monitoring includes regular check-ups and bleeding episode tracking, which are crucial for timely interventions.
Goals and Outcomes
- Reduce Morbidity and Mortality: By providing preventive care, the aim is to reduce the morbidity and mortality associated with Hemophilia in children. Early intervention can prevent severe bleeding events and their associated complications.
- Improve Quality of Life: Ensuring that children receive appropriate care and preventive measures can enhance their quality of life. Children can participate more fully in daily activities and experience fewer interruptions due to health issues.
- Family Support: Offering comprehensive care that includes genetic counseling supports families in understanding the condition, managing risks, and making informed decisions about their child's health.
Healthcare Settings and Implementation
The implementation of this eCQM involves various healthcare settings where preventive care can be effectively administered:
- Clinicians Office: Regular visits for genetic counseling, preventive education, and monitoring.
- Acute Inpatient Hospital: Immediate care and monitoring for severe cases or complications.
- Home: Home healthcare services that provide convenient and ongoing preventive care.
- Acute Outpatient Hospital Area: Scheduled outpatient visits for treatments and consultations.
- Long-term Care Hospital: Extended care for children with severe health conditions or complications from Hemophilia.
By tracking and reporting this measure, healthcare providers can enhance the quality of care for at-risk pediatric patients, ensuring timely and appropriate preventive interventions that can significantly impact their health outcomes.
Comments
On behalf of CMS, we thank you for submitting this eCQM concept. We acknowledge its receipt and are sharing it with CMS' internal measurement group. They will reach out to you if they have further questions.