Our group has an abiding commitment to help improve the lives of children with complex chronic conditions (CCCs) and their families.
For certain research studies, we have needed to identify children with CCCs in large datasets that contain lists of diagnoses for each child.
Below are links to statistical packages that will essentially examine all the diagnoses listed for a child and specify whether or not the child has any type of CCC diagnosis and then what specific category or categories of CCC diagnoses are listed. These packages are now available in Stata, SAS, and R (which was developed by collaborators at the University of Colorado). The packages will work for both diagnoses listed in either the ICD 9 or the ICD 10 nomenclature.
Lastly, here are some key references regarding the CCC classification system:
Feudtner C, Christakis DA, Connell FA. Pediatric deaths attributable tocomplex chronic conditions: a population-based study of Washington State,1980-1997. Pediatrics. 2000 Jul;106(1 Pt 2):205-9. PubMed PMID: 10888693.
Feudtner C, Hays RM, Haynes G, Geyer JR, Neff JM, Koepsell TD. Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services. Pediatrics. 2001 Jun;107(6):E99. PubMed PMID: 11389297.
Feudtner C, Feinstein JA, Zhong W, Hall M, Dai D. Pediatric complex chronicconditions classification system version 2: updated for ICD-10 and complexmedical technology dependence and transplantation. BMC Pediatr. 2014 Aug8;14:199. doi: 10.1186/1471-2431-14-199. PubMed PMID: 25102958; PubMed CentralPMCID: PMC4134331.
Feinstein JA, Russell S, Dewitt PE, Feudtner C, Dai D, Bennett TD. R Package for Pediatric Complex Chronic Condition Classification. JAMA Pediatrics (in press).