Prevalence of life-threatening conditions in children

Objective: We estimated the prevalence of children with life-threatening conditions (LTC) cared for in the military health system (MHS) in response to a Congressional inquiry and to inform program planning. Methods: We developed a case definition of LTC, using the concept "death trajectory" ^1,2 to define our cases. We conducted an unduplicated count of children with LTC in the MHS database during FY 2001/FY 2002 using selected ICD-9 codes based on our case definition. We then surveyed the literature for reported prevalence of LTC among children with similar case definitions. The concept of "death trajectory" describes non-categorical life-threatening conditions of four types: progressive decline to death (e.g., spinal muscular atrophy); intermittent periods of intensive care to maintain quality-of-life (e.g., cystic fibrosis); curative treatment is possible but may fail (e.g., childhood cancers); and severe but non-progressive disability with extreme health vulnerability (e.g., spastic quadriplegia with tracheotomy). Results: There were 3,976 children identified with LTC in a population of 2.6 million children, for a prevalence of 0.15%. Conclusion: A prevalence of 0.15% for children with LTC in the MHS population agrees closely with that derived for similar case definitions by other authors among populations of children in other single-payer health care systems (i.e., United Kingdom). The method used here may apply to similar health care systems with ICD 9 codes in a searchable database.