TY - JOUR
T1 - Framework for identifying children who have chronic conditions
T2 - The case for a new definition
AU - Stein, Ruth E.K.
AU - Bauman, Laurie J.
AU - Westbrook, Lauren E.
AU - Coupey, Susan M.
AU - Ireys, Henry T.
N1 - Funding Information:
Health problems among infants, children, and adolescents pose formidable challenges, not only for their families, but also for the nation as a whole. As a result of biotechnical advances in treatment, many children with chronic health conditions now live into adolescence and adulthood. These children have captured national attention because the Supported by National Institute of Mental Health grants 5P50 MH 38280 and R29 MH 43379 and by Maternal and Child Health Bureau grant MCJ-367007. Reprint requests: Ruth E. K. Stein, MD, Preventive Intervention Research Center for Child Health, Department of Pediatrics, Albert Einstein College of Medicine, 1300 Morris Park Ave., Bronx, NY 10461. Copyright 9 1993 by b.losby-Year Book, Inc. 0022-3476/93/$1.00 + .10 9119/43889 affected population is large, the problems presented are complex, and the implications are long term. I Traditionally, CCHC have been viewed as members of specific diagnostic groups. A condition list was used to de- CCHC Children with chronic health conditions \[ I CSHCN Children with special health care needs I termine eligibility of children for program participation or services. Ifa child's condition matched a disorder named on the list, the child was eligible. If the condition did not match any of the disorders named on the list, the child was deemed ineligible. Now a federal mandate requires many public programs to supplant disease-specific listings with a broader framework.
PY - 1993/3
Y1 - 1993/3
N2 - 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 applled 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.
AB - 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 applled 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.
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U2 - 10.1016/S0022-3476(05)83414-6
DO - 10.1016/S0022-3476(05)83414-6
M3 - Article
C2 - 8441085
AN - SCOPUS:0027453180
SN - 0022-3476
VL - 122
SP - 342
EP - 347
JO - The Journal of Pediatrics
JF - The Journal of Pediatrics
IS - 3
ER -