Framework for identifying children who have chronic conditions: the case for a new definition

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.