Observations 1251 Variables 207

Observations 1251 Variables 207 Alphabetic List of Variables and Attributes # Variable Type Len Format Label Coding 89 Activities_of_Daily_Living Char 24 Activities of Daily Living 155 Adult Num 8 Pediatric is < 18 Years of Age (Adult:1 Pediatric:0) 1=YES 154 Age Num 8 Age in Years ((date - birthdate)/365.25) 14 As_Of_Date Num 8 MMDDYY10. Cutoff Date for the Dataset 26 Birth_Weight_G Num 4 Birth Weight in Grams 25 Birth_Weight_KG Num 8 Birth Weight in Kilograms 23 Birth_Weight_LBs Num 3 Birth Weight in Pounds 24 Birth_Weight_OZ Num 8 Birth Weight in Ounces 57 Bowel_Length_after_Procedure Num 4 Bowel Length after Procedure 56 Bowel_Lengthening_Procedure Char 73 Bowel Lengthening Procedure 55 Bowel_Measurement_Estimate_Sourc Char 12 Bowel Measurement Estimate Source 298 Bowel_Measurement_Technique Num 8 Bowel Measurement Technique 1=ESTIMATED 2=RADIOGRAPH 3=TIME OF SURGERY 90 Care_of_Catheter Char 14 Care of Catheter 300 Catheter_Lumen Num 8 Catheter Lumen 1=DOUBLE 2=SINGLE 3=TRIPLE 299 Catheter_Type Num 8 Catheter Type 1=PICC 2=PORT 3=TUNNELLED 4=OTHER 86 Catheter_Type_Other Char 12 Catheter Type Other 3 ClientNumber Num 6 Client ID Number (Linking Variable) 293 Colonic_Stoma Num 8 Colonic_Stoma 1=SELECTED 32 Current_School_Grade Num 3 Current School Grade 39 Current_Weight Num 8 Current Weight (kg) 162 DX_AIDS_ Num 8 Diagnosis: AIDS 1=SELECTED 164 DX_Crohns_Disease_ Num 8 Diagnosis: Crohn's Disease 1=SELECTED 165 DX_Cystic_Fibrosis_ Num 8 Diagnosis: Cystic Fibrosis 1=SELECTED 163 DX_Esophageal_Atresia_ Num 8 Diagnosis: Esophageal Atresia 1=SELECTED

169 DX_GI_Bypass_for_Obesity_ Num 8 Diagnosis: GI Bypass for Obesity 1=SELECTED 166 DX_Gastrointestinal_Cance_ Num 8 Diagnosis: Gastrointestinal Cancer 1=SELECTED SELECTED 167 DX_Gastromotility_Disorde_ Num 8 Diagnosis: Gastromotility/Pseudo-obstruction Disorder 1=SELECTED 168 DX_Gastroschisis_ Num 8 Diagnosis: Gastroschisis 1=SELECTED 170 DX_Gynecological_tumor_ Num 8 Diagnosis: Gynecological Tumor 1=SELECTED 171 DX_Hirchsprungs_Disease_ Num 8 Diagnosis: Hirchsprungs Disease 1=SELECTED 172 DX_Hyperemesis_Gravidarum_ Num 8 Diagnosis: Hyperemesis Gravidarum 1=SELECTED 173 DX_Intestinal_Atresia_ Num 8 Diagnosis: Intestinal Atresia 1=SELECTED 174 DX_Mesenteric_Ischemia_ Num 8 Diagnosis: Mesenteric Ischemia 1=SELECTED 175 DX_Mitochondrial_Disorder_ Num 8 Diagnosis: Mitochondrial Disorder 1=SELECTED 176 DX_Necrotizing_Enterocoli_ Num 8 Diagnosis: Necrotizing Enterocoli 1=SELECTED 177 DX_Neuro_Swallowing_Disor_ Num 8 Diagnosis: Neurological Swallowing Disorder 1=SELECTED 178 DX_NonCrohns_Inflam_Bowel_ Num 8 Diagnosis: Non-Crohn's Inflammatory Bowel Disease 1=SELECTED 179 DX_Pancreatitis_ Num 8 Diagnosis: Pancreatitis 1=SELECTED 180 DX_Radiation_Enteritis_ Num 8 Diagnosis: Radiation Enteritis 1=SELECTED 181 DX_Short_Bowel_Syndrome_ Num 8 Diagnosis: Short Bowel Syndrome 1=SELECTED 158 Depre_New_Diag_Depresion_Requi_ Num 8 Depression: New Diagnosis Depression Requiring Treatment 1=SELECTED 159 Depre_New_Treatment_Situational_ Num 8 Depression: New Treatment Situational Depression 1=SELECTED 1=SELECTED 161 Depre_PreHPN_Diag_Major_Depres_ Num 8 Depression: Pre-HPN Diagnosis: Major Depression (DSM-IV) 157 Depres_New_Diag_Anxiety_Requir_ Num 8 Depresion New Diagnosis Anxiety Require 1=SELECTED 160 Depres_PreHPN_Diag_Anxiety_Diso_ Num 8 Depression: Pre-HPN Diagnosis: Anxiety Disorder 1=SELECTED 182 Diet_Ad_Lib_ Num 8 Diet: Ad Lib 1=SELECTED 183 Diet_Concurrent_Enteral_ Num 8 Diet: Concurrent Enteral 1=SELECTED 84 Diet_Enteral_Formula_Product Char 71 Diet: Enteral Formula Product 1=SELECTED 83 Diet_Enteral_Pct_Calories Num 8 Diet: Enteral Pct Calories 1=SELECTED

184 Diet_Food_Bev_for_Comfort_ Num 8 Diet: Food and/or Beverage for Comfort Only 1=SELECTED 185 Diet_Liquid_Oral_Rehyd_ Num 8 Diet: Liquids or Oral Rehydration Only 1=SELECTED 186 Diet_NPO_ Num 8 Diet: NPO 1=SELECTED 85 Diet_Pct_Calories_from_Oral Num 8 Diet: Percent Calories from Oral 187 Diet_Restricted_Therapeutic_ Num 8 Diet: Restricted Therapeutic 1=SELECTED 188 Disabl_Dexterity_Impairment_ Num 8 Disability: Dexterity Impairment 1=SELECTED 189 Disabl_Hearing_Deficit_ Num 8 Disability: Hearing Deficit 1=SELECTED 190 Disabl_Mobility_Impairment_ Num 8 Disability: Mobility Impairment 1=SELECTED 60 Disabl_Other_Detail Char 48 Disablility Other Detail 192 Disabl_Visual_Impairment_ Num 8 Disability: Visual Impairment 1=SELECTED 88 Dressing_Change_Frequency Char 6 Dressing Change Frequency 301 Dressing_Changed_By Num 8 Dressing Changed By 1=PATIENT AND CAREGIVER 2=CAREGIVER 3=PATIENT 4=VISITING NURSE 92 Employment_Status Char 10 Employment Status 305 Ethnicity Num 8 Ethnicity 1= HISPANIC OR LATINO T HISPANIC OR LATINO 79 Fat_Emul_Cycle_Hours Num 8 Fat Emulsion: Cycle Hours 193 Fat_Emul_Daily_ Num 8 Fat Emulsion: Daily 1=SELECTED 194 Fat_Emul_Friday_ Num 8 Fat Emulsion: Friday 1=SELECTED 195 Fat_Emul_Monday_ Num 8 Fat Emulsion: Monday 1=SELECTED 196 Fat_Emul_Saturday_ Num 8 Fat Emulsion: Saturday 1=SELECTED 197 Fat_Emul_Source_Omega_3_ Num 8 Fat Emulsion Source: Omega 3 1=SELECTED 198 Fat_Emul_Source_Other_ Num 8 Fat Emulsion Source: Other 1=SELECTED 199 Fat_Emul_Source_Soybean_Only_ Num 8 Fat Emulsion Source: Soybean Only 1=SELECTED 200 Fat_Emul_Source_Soybean_Safflow_ Num 8 Fat Emulsion Source: Soybean/Safflower 1=SELECTED 201 Fat_Emul_Sunday_ Num 8 Fat Emulsion: Sunday 1=SELECTED 202 Fat_Emul_Thursday_ Num 8 Fat Emulsion: Thursday 1=SELECTED 203 Fat_Emul_Tuesday_ Num 8 Fat Emulsion: Tuesday 1=SELECTED

204 Fat_Emul_Wednesday_ Num 8 Fat Emulsion: Wednesday 1=SELECTED 80 Fat_Emul_g_Daily Num 8 Fat Emulsion: Grams Daily 81 Fat_Emul_g_per_kg_Daily Num 8 Fat Emulsion: Grams per Kilogram Daily 291 Finished_College Num 8 Finished College 1=YES 290 Finished_High_School Num 8 Finished High School 1=YES 288 Gender Num 8 Gender 1=MALE 2=FEMALE 22 Gestational_Age_at_Birth Num 3 Gestational Age at Birth 205 Goal_Future_Surgery_ Num 8 HPN Goal: Future Surgery 1=SELECTED 206 Goal_GI_Issue_Resolution_ Num 8 HPN Goal: GI Issue Resolution 1=SELECTED 207 Goal_Indefinite_HPN_ Num 8 HPN Goal: Indefinite HPN 1=SELECTED 208 Goal_Weight_Gain_ Num 8 HPN Goal: Weight Gain 1=SELECTED 209 Goal_Weight_Loss_ Num 8 HPN Goal: Weight Loss 1=SELECTED 210 Goal_Weight_Maintenance_ Num 8 HPN Goal: Weight Maintenance 1=SELECTED 33 Has_Internet_Access Char 14 Has Internet Access 34 Height Num 8 Height (m) 296 History_Bowel_Lengthening Num 8 History Bowel Lengthening 1=YES 27 Home_Location Char 8 Home Location 295 Ileocecal_valve Num 8 Ileocecal Valve 1=YES 211 Insurance_Medicaid_ Num 8 Insurance: Medicaid 1=SELECTED 213 Insurance_Medicare_ Num 8 Insurance: Medicare Supplement 1=SELECTED 212 Insurance_Medicare_Supplement_ Num 8 Insurance: Medicare 1=SELECTED 214 Insurance_Other_ Num 8 Insurance: Other 1=SELECTED 215 Insurance_Personal_Payment_ Num 8 Insurance: Personal Payment 1=SELECTED 216 Insurance_Private_ Num 8 Insurance: Private 1=SELECTED 48 Labs_ALT Num 8 Labs: ALT 47 Labs_AST Num 8 Labs: AST

50 Labs_BUN Num 8 Labs: BUN 51 Labs_Creatinine Num 8 Labs: Creatinine 46 Labs_Direct_Bilirubin Num 8 Labs: Direct Bilirubin 49 Labs_INR Num 8 Labs: INR 45 Labs_Platelet_Count Num 8 Labs: Platelet Count 44 Labs_Serum_Albumin Num 8 Labs: Serum Albumin 294 Large_Small_Bowel_Continuity Num 8 Large Small Bowel Continuity 1=YES 35 Length Num 4 Length in children (cm) 54 Length_Large_Bowel_Continuity Num 8 Length Remaining Large Bowel in Continuity 53 Length_Small_Bowel_Continuity Num 8 Length Remaining Small Bowel in Continuity 217 Meds_AntiInfective_ Num 8 Medications: AntiInfective 1=SELECTED 218 Meds_Antineoplastic_ Num 8 Medications: Antineoplastic 1=SELECTED 219 Meds_AutoNOT SELECTEDmic_Drugs_ Num 8 Medications: AutoNOT SELECTEDmic Drugs 1=SELECTED 220 Meds_Cardiovascular_ Num 8 Medications: Cardiovascular 1=SELECTED 221 Meds_Central_Nervous_System_ Num 8 Medications: Central Nervous System 1=SELECTED 222 Meds_Electrolytic_ Num 8 Medications: Electrolytic 1=SELECTED 223 Meds_Ethano _Lock_ Num 8 Medications: Ethanol Lock 1=SELECTED 225 Meds_GI_Antacid_ Num 8 Medications: GI Antacid 1=SELECTED 229 Meds_GI_AntiInflammatory_ Num 8 Medications: GI AntiInflammatory 1=SELECTED 226 Meds_GI_Antidiarrhea_ Num 8 Medications: GI Antidiarrhea 1=SELECTED 227 Meds_GI_Antiemetics_ Num 8 Medications: GI Antiemetics 1=SELECTED 228 Meds_GI_Antiflatulents_ Num 8 Medications: GI Antiflatulents 1=SELECTED 230 Meds_GI_Antiulcer_Acid_Suppress_ Num 8 Medications: GI Antiulcer Acid Suppressants 1=SELECTED 231 Meds_GI_Cathartics_ Num 8 Medications: GI Cathartics 1=SELECTED 232 Meds_GI_Cholelitholytic_ Num 8 Medications: GI Cholelitholytic 1=SELECTED 233 Meds_GI_Digestants_ Num 8 Medications: GI Digestants 1=SELECTED 234 Meds_GI_Emetics_ Num 8 Medications: GI Emetics 1=SELECTED 235 Meds_GI_Lipotropic_Agents_ Num 8 Medications: GI Lipotropic Agents 1=SELECTED

236 Meds_GI_Prokinetic_ Num 8 Medications: GI Prokinetic 1=SELECTED 224 Meds_Gastrointestinal_ Num 8 Medications: Gastrointestinal 1=SELECTED 237 Meds_Hormones_ Num 8 Medications: Hormones 1=SELECTED 238 Meds_Pain_ Num 8 Medications: Pain 1=SELECTED 239 Meds_Vitamins_ Num 8 Medications: Vitamins 1=SELECTED 36 Method Char 16 Method 94 Mobility Num 3 Mobility Status 240 Not_Working_Due_to_Health_ Num 8 Not Working Due to: Health 1=SELECTED 93 Not_Working_Due_to_Insurance Num 3 No Working Due to: Insurance 1=SELECTED 241 Not_Working_Leave_of_Absence_ Num 8 Not Working Due to: Leave of Absence 1=SELECTED 242 Not_Working_Medical_Disability_ Num 8 Not Working Due to: Medical Disability 1=SELECTED 243 Not_Working_Retired_ Num 8 Not Working: Retired 1=SELECTED 244 Other_Diagnois_ Num 8 Other Diagnosis 1=SELECTED 156 PN_Admin_Responsible_Other2 Char 19 PN Admin Responsible Other2 303 PN_Administration_Responsible_1 Num 8 PN Administration Responsible 1=CHILD 2=HIRED HELP 3=PARENT 4=SELF 5=SIGNIFICANT OTHER 6=SPOUSE 7=OTHER 96 PN_Administration_Responsible_2 Char 30 Additional Persons Responsible for PN Administration 1 97 PN_Administration_Responsible_3 Char 37 Additional Persons Responsible for PN Administration 2 245 PN_Infus_Daily_ Num 8 PN Infusion: Daily 1=SELECTED 74 PN_Infus_Dextrose_g_Daily Num 8 PN Infusion: Dextrose g Daily 75 PN_Infus_Dextrose_g_per_kg_Daily Num 8 PN Infusion: Dextrose Grams per Kilogram Daily 76 PN_Infus_Dextrose_mg_per_kg_Dail Num 8 PN Infusion: Dextrose Milligrams per Kilogram Daily 246 PN_Infus_Friday_ Num 8 PN Infusion: Friday 1=SELECTED 247 PN_Infus_Monday_ Num 8 PN Infusion: Monday 1=SELECTED 77 PN_Infus_Protein_g_Daily Num 8 PN Infusion: Protein Grams Daily 78 PN_Infus_Protein_g_per_kg_Daily Num 8 PN Infusion: Protein Grams per Kilogram Daily 248 PN_Infus_Saturday_ Num 8 PN Infusion: Saturday 1=SELECTED

249 PN_Infus_Sunday_ Num 8 PN Infusion: Sunday 1=SELECTED 250 PN_Infus_Thursday_ Num 8 PN Infusion: Thursday 1=SELECTED 251 PN_Infus_Tuesday_ Num 8 PN Infusion: Tuesday 1=SELECTED 72 PN_Infus_Volume_ml_Daily Num 8 PN Infusion: Volume Milliliters Daily 73 PN_Infus_Volume_ml_per_kg_Daily Num 8 PN Infusion: Volume Milliliters per Kilogram Daily 252 PN_Infus_Wednesday_ Num 8 PN Infusion: Wednesday 1=SELECTED 304 Patient_Aware_of_Resources Num 8 Patient Aware of Resources 1=YES 297 Patient_Lives_With Num 8 Patient Lives With 1=ALONE 2=CHILD 3=HIRED HELP 4=PARENT 5=SIGNIFICANT OTHER 6=SPOUSE 7=OTHER 30 Patient_Lives_With_Other Char 34 Patient Lives With Other 15 Patient_Type Char 19 Patient HPN Status at Time of Enrollment 41 PercentileBMI Num 3 Percentile BMI 42 PercentileHeadCircumference Num 8 Percentile Head Circumference 40 PercentileWeightForHeightLength Num 3 Percentile Weight For Height Length 302 Primary_Caregiver Num 8 Primary Caregiver 1=CHILD 2=HIRED HELP 3=PARENT 4=SELF 5=SIGNIFICANT OTHER 6=SPOUSE 7=OTHER 95 Primary_Caregiver_Other Char 28 Primary Caregiver Other 289 Primary_Language_English Num 8 Primary Language English 1=YES 29 Primary_Language_Other Char 10 Primary Language Other 253 Problem_Dementia_ Num 8 Neuoropsch Problem: Dementia 1=SELECTED 254 Problem_Depression_ Num 8 Neuropsych Problem: Depression 1=SELECTED 255 Problem_No_Psych_Problem_ Num 8 Neuropsych Problem: None 1=SELECTED 256 Problem_Other_ Num 8 Neuropsych Problem: Other 1=SELECTED 257 Problem_Personality_Disorder_ Num 8 Neuropsych Problem: Personality Disorder 1=SELECTED 91 Productivity Char 3 Productivity/Able to Return to Work or School

261 Race_Black_ Num 8 Race: Black 1=SELECTED 263 Race_White_ Num 8 Race: White 1=SELECTED 266 Reas_Chemotherapy_Associated_G_ Num 8 Reason for HPN: Chemotherapy Associated GI Dysfunction 1=SELECTED 267 Reas_Congenital_Bowel_Defect_ Num 8 Reason for HPN: Congenital Bowel Defect (Intestinal Atresia) 1=SELECTED 268 Reas_Gastrointestinal_Fistula_ Num 8 Reason for HPN: Gastrointestinal Fistula 1=SELECTED 269 Reas_Gastrointestinal_Obstruct_ Num 8 Reason for HPN: Gastrointestinal Obstruction 1=SELECTED 270 Reas_Gastroschisis_Associate_ Num 8 Reason Gastroschisis Associated 1=SELECTED 271 Reas_Intractable_Diarrhea_ Num 8 Reason for HPN: Intractable Diarrhea 1=SELECTED 272 Reas_Intractable_Vomiting_ Num 8 Reason for HPN: Intractable Vomiting 1=SELECTED 273 Reas_Mesenteric_Ischemia_ Num 8 Reason for HPN: Mesenteric Ischemia 1=SELECTED 274 Reas_Necrotizing_Enterocolitis_ Num 8 Reason for HPN: Necrotizing Enterocolitis 1=SELECTED 275 Reas_Neurological_Swallowing_D_ Num 8 Reason for HPN: Neurological Swallowing Disorder 1=SELECTED 276 Reas_NonShort_Bowel_Diarrhea_ Num 8 Reason for HPN: Non Short Bowel Diarrhea 1=SELECTED 277 Reas_Other_ Num 8 Reason Other Detail 1=SELECTED 278 Reas_Pancreatitis_ Num 8 Reason for HPN: Pancreatitis 1=SELECTED 279 Reas_Radiation_Enteritis_ Num 8 Reason for HPN: Radiation Enteritis 1=SELECTED 280 Reas_Short_Bowel_Syndrome_ Num 8 Reason for HPN: Short Bowel Syndrome 1=SELECTED 264 Reason_Active_IBD_ Num 8 Reason for HPN: Active IBD 1=SELECTED 265 Reason_Bowel_Dysmotility_ Num 8 Reason for HPN: Bowel Dysmotility 1=SELECTED 292 Small_Bowel_Stoma Num 8 Small Bowel Stoma 1=YES 52 Stoma_Location Char 33 Stoma Location 281 Teach_Home_PN_Child_ Num 8 Taught Home PN: Child 1=SELECTED 282 Teach_Home_PN_Hired_Professiona_ Num 8 Taught Home PN: Hired Professional 1=SELECTED 283 Teach_Home_PN_Other_ Num 8 Taught Home PN: Other 1=SELECTED 284 Teach_Home_PN_Parent_ Num 8 Taught Home PN: Parent 1=SELECTED

285 Teach_Home_PN_Patient_ Num 8 Taught Home PN: Patient 1=SELECTED 286 Teach_Home_PN_Significant_Other_ Num 8 Taught Home PN: Significant Other 1=SELECTED 287 Teach_Home_PN_Spouse_ Num 8 Taught Home PN: Spouse 1=SELECTED 37 Usual_Weight Num 8 Usual Weight (kg)