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Framework for identifying children who have chronic conditions: the case for a new definition
R E Stein1, L J Bauman, L E Westbrook
1Department of Pediatrics, Albert Einstein College of Medicine, Bronx, NY 10461.
Insights
A new noncategorical framework identifies children with ongoing health conditions by their health consequences, not just diagnoses. This approach aligns with federal mandates for services and benefits eligibility.
Area of Science:
- Pediatrics
- Health Services Research
- Public Health Policy
Background:
- Traditional methods for identifying children with ongoing health conditions rely on diagnostic lists.
- Diagnostic labels have limitations, including incompleteness, inconsistency, and failure to capture morbidity extent.
- Legislation and court rulings now mandate a noncategorical approach for determining eligibility for services and benefits.
Purpose of the Study:
- To develop and present a noncategorical framework for identifying children with ongoing health conditions.
- To create a system that uses health consequences rather than diagnostic labels.
- To align with federal mandates for services and benefits eligibility.
Main Methods:
- Development of a noncategorical framework focusing on the consequences of health conditions.
- The framework is designed to be adaptable for various purposes (services, research, policy, reimbursement, eligibility).
- The framework is consistent across diagnoses and descriptive of morbidity impact.
Main Results:
- A noncategorical framework has been developed to identify children based on health consequences.
- This framework addresses limitations of traditional diagnostic lists.
- The tool is adaptable, consistent, and can incorporate severity levels.
Conclusions:
- The developed noncategorical framework offers a more comprehensive and equitable method for identifying children with ongoing health conditions.
- This approach aligns with current legislative and judicial mandates.
- The screening tool is nearing practical application for diverse health-related objectives.
Abstract:
Efforts to identify children with ongoing health conditions generally rely on lists of diagnoses. However, there has been a growing trend to use a noncategorical, or generic, approach in which such children are identified by the consequences of their condition. Recent legislation and the Supreme Court decision in Sullivan v Zebley adopt this broader concept and mandate that a noncategorical approach be used in determining eligibility for services and benefits. Traditional condition lists are less desirable because (1) every disorder to which children are subject cannot be included, (2) diagnoses may be applied inconsistently by clinicians and across settings, (3) condition labels alone do not convey the extent of morbidity for individuals, (4) there is a bias toward identifying only those children who have access to the medical care system, and (5) there is often a gap between emergence of symptoms or consequences and diagnosis. We developed a noncategorical framework for identifying children with ongoing health conditions that responds to the federal mandate and uses consequences of disorders, rather than diagnostic labels. It can be applied to meet the objectives of services, research, policy, reimbursement, or program eligibility; is consistent across diagnoses; is descriptive of the impact of morbidity; is adaptable to meet specific purposes; and can be modified by imposing different severity levels. Our screening tool will soon be available for practical use.