Malignancy ; 191.6; Malignant neoplasm of brain

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APPENDIX 15 Comparison of ICD-9 Diagnostic Codes Used to Identify Children with Life-Threatening or Life-Limiting or Comple Chronic Conditions By Five CHI PACC Programs ICD-9 Category ICD-9 Description and Chris Feudtner (July 6, 2004) ICD-9 Diagnosis Codes Infectious Human Immunodeficiency virus (HIV) disease 042 042 042 042 Neoplasms/malignancy 140.0-239.9 140.0-239.9 Malignant neoplasm of digestive organs & peritoneum 150.0-150.9 Malignant neoplasm of colon 153.9 Malignant neoplasm of liver and intrahebatic bile ducts 155.0-155.2 155.0 Malignant neoplasm of pancreas 157.0-157.9 Malignant neoplasm of retroperitoneum and perioteneum 158.0-158.8 Malignant neoplasm other & ill defined sites in digestive orgs. 159.0-159.9 Malignant neoplasm of trachea, bronchus, and lung 162.0-162.9 162.9 Malignant neoplasm of thymus, heart and mediastinum 164.0-164-9 Malignant neoplasm of other & ill defined sites in respiratory 165-0 -165-9 Malignant neoplasm of bone and articular cartilage 170.0-170.9 170.0-176.9 170.9 Malignant neoplasm of connective and other soft tissue 171.0-171.9 171.9 Malignant neoplasm of testis 186.0-186.9 Malignant neoplasm of kidney & other unspecified urinary organs 189.0-189.9 189.0 Neoplasms Malignant neoplasm of eye 190.0-190.9 190.0-199.1 Malignancy 191.0; 191.6; Malignant neoplasm of brain 191.0-191.9 191.7; 191.9 Malignant neoplasm other & unspecified parts of nervous sy.. 192.0-192.9 192.0; 192.1 Malignant neoplasm of thyroid gland 193 Malignant neoplasm other endocrine glands & related struct. 194.0-194.9 194.0; 194.4 Malignant neoplasm of other ill-defined sites 195.0-195.8 Malignant neoplasm without specification of site 199.0-199.1 199.1 Endocrine Metabolic Malignant neoplasm of lympathic & hematopoietic tissue 200.0-208.9 200.0-208.9 201.9; 202.8; 204.0; 205.0; 205.1; 208.0; 208.9 Hemangioma and lymphangioma, any site 228.0 Neoplasms of brain and spinal cord 237.5 237.0; 237.7; 238.0 Neoplasms of unspecified nature 239.6; 239.7 Diabetes melitus 250.0-250.93 250.0; 250.1 Dwarfism/bone & joint anamolies 259.4 259.4 Amino acid metabolism 270-270.9 270.6; 270.7 Carbohydrate metabolism 271.0-271.9 271.0 15-1

Endocrine Metabolic Blood Hematology & Immunodeficency Nervous Neuromuscular Circulatory Cardiovascular Lipid metabolism 272.0-272.9 272.0-272.9 272.7 Lipidoses 272.7 Disorders of mineral metabolism 275.0-275.3 Cystic fibrosis 277.0 277.0 Other metabolic disorders 277.2-277.6 277.5 Mucopolysacchardidosis., etc. 277.8-277.9 277.5-277.9 277.0-277.9 277.6; 277.8-277.9 Hereditary immunodeficiency Deficiency of cell-mediated immunity 279.0-279.9 279.1-279.19 279.1; 279.2 Combined immunity deficiency 279.2 Unspecified immunity deficiency 279.3 279.3 Hereditary anemias 282.0-282.4 282.3; 282.6 Sickle-cell anemia 282.5-282.6 282.60-282.69 Aplastic anemia 284.0-284.9 284.9 Coagulation defects 286.0-286.3 286.0; 286.6; 286.9 Hereditary immunodeficiency (diseases of white blood cells) 288.1-288.2 Mental retardation 318.0-319.0 Central nervous system degeneration & disease 330.0-337.9 330.0-337.9 331.0-331.9 330.0; 330.1; 330.8; 331.4; 331.8 Other cerebral degenerations 330.1 Anterior horn cell disease 335.0-335.9 335.0-335.9 335.0; 335.1 Infantile cerebral palsy - Quadriplegic 343.0-343.9 343.2 343.2 Infantile cerebral palsy - unspecified 343.9 343.9 343.9 Epilepsy 345.0-345.9 Other unspecified conditions of nervous system 348.2-348.4 348.0-348.9 348.1; 348.3-348.5; 348.8; 348.9; 349.8 Muscular dystrophies & brain myopathies 359.0-359.3 359.0-359.1 359.0-359.2 Unspecified hypertensive heart disease 402.9 Acute myocaredial infarction 410 Cornary atherosclerosis 414.0 Chronic ischemic heart disease, NOS 414.9 Chronic pulmonary hypertension 416.0 Chronic pulmonary heart disease 416.9 Cardiomyopathy 425.0-425.4 425.0-425.4 425.0-425.9 425.3; 425.4; 425.9 15-2

Circulatory Cardiovascular Respiratory Digestive Genitourinary Congenital Conduction disorders 426.0-427.4 426.0; 426.8; 427.4 Dysrhythmias 427.6-427.9 427.5-427.9 427.9 Congestive heart disease 428.0 Myocarditis, unspecified 429.1 429.0-429.9 429.0-429.9 429.0; 429.1; 429.3; 429.9 Intracerebral Hemorrhage 431 Cerebvrovascular (acute) 436 Unspecified cardiovascular disease/lesion 437.9 General and unspecified artherosclerosis 440.9 Acute febrile mucocutaneous lymph node syndrome 446.1 Asthma 493.0-493.9 Chronic airway obstruction, not elsewhere classified 496 Chronic respiratory failure 518.8 Other diseases of the respiratory system 519.1 Diaphragmatic hernia 553.3 553.3 Inflammatory bowel disease 555.0-556.9 Chronic liver disease and cirrhosis 571.4-571.9 571.4-571.9 Acute renal failure 571.5; 571.8 Chronic renal failure 585 585 585 Renal failure unspecified 586 586 586 Curvature of spine 373.3 740.0-742.9 740.0-740.2 740.0-742.9 740.0-740.2 Brain& spinal cord malformations Anencephalus Spina bifida 741.0-741.9 Other congenital anomalies of nervous system 742.0-742.9 745.0-747.4 745.0-747.4 740.0; 740.2; 741.0; 741.9; 742.0-742.4; 742.8; 742.9 Heart & great vessel malformations 745.1; 745.2 745.3; 745.5; Bulbus cordis anomalies & cardiac septal closure 745.0-745.3 745.0-745.9 745.6 Other congenital anomalies of the heart 746.1-746.4 Hypoplastic left heart syndrome 746.7 746.0-746.9 746.7-746.9 Other specified anamolies of the heart 746.85-746.86 747.41 747.0-747.4; Other congenital anomalies of the circulatory system 747.0-747.8 747.6; 747.7 748.0-748.9 748.0-748.9 748.3; 748.5; Respiratory malformations 748.0-748.9 748.6 Other congenital anomalies respiratory sys. 748.3-748.5 Congenital anamolies - gastrointestinal 750.3 15-3

Congenital Perinatal Injury & Poisoning Other congenital anomalies digestive sys. 751.1-751.3 751.1-751.2 751.0-751.9 751.3 Congenital anamolies - gastrointestinal 751.6-751.9 751.6 Congenital anamolies -renal 753.0-753.9 Congenital anomalies of urinary system 753.0-753.1 753.0-753.9 753.1; 753.9 Congenital muscuskeletal 756.0-756.5 756.1-756.9 756.0; 756.1; Osteogenesis imperfecta 756.51 756.5-756.8 Anomalies of diaphragm 756.6 756.6 Anomalies of abdominal wall 756.7 756.7-756.71 Down's syndrome / chromosomal anomalies 758.0-758.9 758 758.0-758.9 758.0-758.9 Patau's syndrome 758.1 758.1 Edward's syndrome [and other chromosomal abnormalities] 758.2 758.2; 753.3; 758.5; 758.9 Multiple congenital anomalies, 759.7 759.7 759.7-759.9 759.7 759.7 Other specified anamolies 759.81-759.89 759.8 Fragile X Syndrome 759.83 Congenital anomaly, unspecified 759.9 759.9 759.9 Other maternal specified conditions affecting fetus/newborn 760.0-760.8 Fetus/newborn affected by maternal complications of pregnancy 761.0-761.9 Etreme immaturity 765 765.0-765.9 765.0 Other preterm infants 765.1 765.10-765.19 765.1 Birth asphyiation 768.5-768.9 Respiratory distress syndrome in newborn 769 769 Chronic respiratory disease arising in perinatal period 770.7 770.7 770.0-770.9 770.7 Other infections specific to the perinatal period 771.8 NEC and intestinal perforation 777.5-777.6 Asphyiation & strangulation 994.7 Child maltreatment syndrome 995.50-995.59 Shaken infant syndrome 995.55 Complications of transplanted bone marrow 996.85 Eternal Injury Accidental drowning or submersion E910 Codes in bold for Utah and Florida indicate that in addition to diagnosis, other factors such as hospitalization or utilization of other services, co-morbidity, etc.are required to identify the child as having a life-threatening condition. Sources: FEUDTNER, Chris, et.al, "Deaths Attributed to Pediatric Comple Chronic Conditions: National Trends and Implications for Supportive Care Services. Pediatrics,Vol.107 No 6, June 2001, p107. UTAH - "State of Utah Application for a Section 1115 Research and Demonstration Program Promoting HOPE for Utah Children, A CHI PACC Project," February 12, 2003 15-4

NEW YORK - Milliman, USA, Inc., New York, N.Y., Kate Fitch, Bruce Pyenson. "Palliative Care for Children with Life Limiting Illness: An Actuarial Evalation of Costs for a New York State Medicaid Demonstration Project," June 10, 2003. KENTUCKY - "PACC Diagnosis Codes for Potential Program Candidates," PACC Diagnosis Severity Inde January 2004. FLORIDA - Partners in Care -Agency for Health Care Administration, Florida Department of Health, Florida Hospice and Palliative Care, Inc., "An 1115 Waiver Request, Program for All-Inclusive Care for Children, Florida, "October 24, 2002. VIRGINIA - From "ICD-9 Diagnosess that Will Define the VAPACC Target Population." From a list of child deaths in Virginia between 1992-1998 in order of frequency, this chart includes only those diagnoses with at least 2 deaths occuring during the 6-year period. 15-5