CDH Data Form V3



CONGENITAL DIAPHRAGMATIC HERNIA FORM(To be used for patients born on or after 1/1/2015)Center #: FORMTEXT ????? Patient #: FORMTEXT ?????Date of Birth: FORMTEXT ????? Time of Birth: FORMTEXT ????? FORMCHECKBOX Inborn FORMCHECKBOX Outborn: Date of Admission: FORMTEXT ????? Time of Admission: FORMTEXT ?????Sex: FORMCHECKBOX M FORMCHECKBOX F Race: FORMCHECKBOX Asian FORMCHECKBOX Black FORMCHECKBOX Hispanic FORMCHECKBOX Native American FORMCHECKBOX White FORMCHECKBOX Other: FORMTEXT ?????EGA (at birth): FORMTEXT ????? weeks Birthweight: FORMTEXT ????? kg Length: FORMTEXT ????? cm Head circumference: FORMTEXT ????? cm APGARs (1/5/10): FORMTEXT ?????/ FORMTEXT ?????/ FORMTEXT ?????SNAP II Score (if done): FORMTEXT ?????CPR (Cardio-Pulmonary-Resuscitation) in Delivery Room: FORMCHECKBOX Yes FORMCHECKBOX NoMethod of Delivery: FORMCHECKBOX Vaginal (Spontaneous) FORMCHECKBOX Vaginal (Induced) FORMCHECKBOX C-section (Elective) FORMCHECKBOX C-section (Urgent/Non-elective)Prenatal diagnosis of CDH: FORMCHECKBOX Yes FORMCHECKBOX No If Yes, diagnosis made at FORMTEXT ????? weeks gestation [Please provide Ultrasound and/or MRI information on pages 7-8 if data available]If No, diagnosis made at Date: FORMTEXT ????? Time: FORMTEXT ?????Prenatal steroids: FORMCHECKBOX Yes FORMCHECKBOX No FORMCHECKBOX Unknown- If yes, # doses: FORMTEXT ?????Surfactant (after delivery): FORMCHECKBOX Yes FORMCHECKBOX No FORMCHECKBOX Unknown- If yes, # doses: FORMTEXT ?????Associated Non-Cardiac Anomalies (Check all that apply and please provide DX if known):Karyotype sent: FORMCHECKBOX Yes FORMCHECKBOX No, if Yes, result: FORMCHECKBOX Normal FORMCHECKBOX Abnormal FORMCHECKBOX Pending/Unknown FORMCHECKBOX Chromosomal – If Yes, please describe: FORMTEXT ????? FORMCHECKBOX Other Anomalies – If Yes, please describe: FORMTEXT ?????Associated Structural Cardiac Anomalies (Check all that apply): FORMCHECKBOX ASD FORMCHECKBOX VSD FORMCHECKBOX AVSD (AV Canal) FORMCHECKBOX Pulmonic Valvular Stenosis/Atresia FORMCHECKBOX Pulmonary Artery Stenosis/Atresia FORMCHECKBOX TOF (Tetralogy of Fallot) FORMCHECKBOX Coarctation of Aorta FORMCHECKBOX TOGV (Transposition of Great Vessels or Transposition of Great Arteries) FORMCHECKBOX Truncus Arteriosus FORMCHECKBOX Complex biventricular anatomy (i.e. heterotaxy syndrome) FORMCHECKBOX Anomalous Pulmonary Venous Return FORMCHECKBOX Single Ventricle Variant (hypoplastic left heart syndrome) FORMCHECKBOX Other- please describe: FORMTEXT ?????(You may explain or elaborate on cardiac diagnosis and /or treatment in the Comments section at the end of the form)Pulmonary Hypertension (PHTN):First ECHO done on Date: FORMTEXT ?????PHTN: FORMCHECKBOX None FORMCHECKBOX < 2/3 systemic FORMCHECKBOX between 2/3 and systemic FORMCHECKBOX > systemicPDA: FORMCHECKBOX L to R FORMCHECKBOX Bidirectional FORMCHECKBOX R to L FORMCHECKBOX No shunt (closed) Diameter of ductus: FORMTEXT ????? mmAtrial shunt: FORMCHECKBOX L to R FORMCHECKBOX Bidirectional FORMCHECKBOX R to L FORMCHECKBOX No shunt (closed)Tricuspid regurgitation peak velocity: FORMTEXT ????? m/sec Systemic BP FORMTEXT ????? / FORMTEXT ?????RV size: FORMCHECKBOX Normal FORMCHECKBOX DilatedRV function: FORMCHECKBOX Normal FORMCHECKBOX Impaired (If impaired, FORMCHECKBOX Systolic dysfunction FORMCHECKBOX Diastolic dysfunctionLV size: FORMCHECKBOX Below normal FORMCHECKBOX Normal FORMCHECKBOX DilatedLV function: FORMCHECKBOX Normal FORMCHECKBOX ImpairedPlasma level FORMTEXT ????? (pg/ml) of FORMCHECKBOX BNP or FORMCHECKBOX pro_BNP To calculate modified McGoon Index:Diameter of Aorta: FORMTEXT ????? mmDiameter of Left Pulmonary Artery: FORMTEXT ????? mmDiameter of Right Pulmonary Artery: FORMTEXT ????? mmSecond (closest to pre-op) ECHO done on Date: FORMTEXT ?????PHTN: FORMCHECKBOX None FORMCHECKBOX < 2/3 systemic FORMCHECKBOX between 2/3 and systemic FORMCHECKBOX > systemicPDA: FORMCHECKBOX L to R FORMCHECKBOX Bidirectional FORMCHECKBOX R to L FORMCHECKBOX No shunt (closed) Diameter of ductus: FORMTEXT ????? mmAtrial shunt: FORMCHECKBOX L to R FORMCHECKBOX Bidirectional FORMCHECKBOX R to L FORMCHECKBOX No shunt (closed)Tricuspid regurgitation peak velocity: FORMTEXT ????? m/sec Systemic BP FORMTEXT ????? / FORMTEXT ?????RV size: FORMCHECKBOX Normal FORMCHECKBOX DilatedRV function: FORMCHECKBOX Normal FORMCHECKBOX Impaired (If impaired, FORMCHECKBOX Systolic dysfunction FORMCHECKBOX Diastolic dysfunctionLV size: FORMCHECKBOX Below normal FORMCHECKBOX Normal FORMCHECKBOX DilatedLV function: FORMCHECKBOX Normal FORMCHECKBOX ImpairedPlasma level FORMTEXT ????? (pg/ml) of FORMCHECKBOX BNP or FORMCHECKBOX pro_BNP Last (closest to end of hospital course) ECHO done on Date: FORMTEXT ?????PHTN: FORMCHECKBOX None FORMCHECKBOX < 2/3 systemic FORMCHECKBOX between 2/3 and systemic FORMCHECKBOX > systemicPDA: FORMCHECKBOX L to R FORMCHECKBOX Bidirectional FORMCHECKBOX R to L FORMCHECKBOX No shunt (closed) Diameter of ductus: FORMTEXT ????? mmAtrial shunt: FORMCHECKBOX L to R FORMCHECKBOX Bidirectional FORMCHECKBOX R to L FORMCHECKBOX No shunt (closed)Tricuspid regurgitation peak velocity: FORMTEXT ????? m/sec Systemic BP FORMTEXT ????? / FORMTEXT ?????RV size: FORMCHECKBOX Normal FORMCHECKBOX DilatedRV function: FORMCHECKBOX Normal FORMCHECKBOX Impaired (If impaired, FORMCHECKBOX Systolic dysfunction FORMCHECKBOX Diastolic dysfunctionLV size: FORMCHECKBOX Below normal FORMCHECKBOX Normal FORMCHECKBOX DilatedLV function: FORMCHECKBOX Normal FORMCHECKBOX ImpairedPlasma level FORMTEXT ????? (pg/ml) of FORMCHECKBOX BNP or FORMCHECKBOX pro_BNP Treatment of Pulmonary Hypertension (PHTN):Check if Used (use “Other” for additional courses of iNO as well as unlisted medications)Date StartedDate Ended FORMCHECKBOX Inhaled Nitric Oxide – Maximum dose: FORMTEXT ????? ppm FORMTEXT ????? FORMTEXT ????? FORMCHECKBOX Sildenafil FORMCHECKBOX Oral FORMCHECKBOX iv FORMTEXT ????? FORMTEXT ????? FORMCHECKBOX Endothelial Receptor Blockade FORMTEXT ????? FORMTEXT ????? FORMCHECKBOX Prostacyclin FORMTEXT ????? FORMTEXT ????? FORMCHECKBOX Alprostadil (PGE1) FORMTEXT ????? FORMTEXT ????? FORMCHECKBOX Milrinone FORMTEXT ????? FORMTEXT ????? FORMCHECKBOX Other (specify): FORMTEXT ????? FORMTEXT ????? FORMTEXT ????? FORMCHECKBOX Other (specify): FORMTEXT ????? FORMTEXT ????? FORMTEXT ????? FORMCHECKBOX Other (specify): FORMTEXT ????? FORMTEXT ????? FORMTEXT ????? FORMCHECKBOX Other (specify): FORMTEXT ????? FORMTEXT ????? FORMTEXT ????? FORMCHECKBOX Other (specify): FORMTEXT ????? FORMTEXT ????? FORMTEXT ?????Ventilation:Intubated at: Date: FORMTEXT ????? Time: FORMTEXT ????? Extubated at: Date: FORMTEXT ????? FORMCHECKBOX Never extubatedValues in the first 24 hours of life (pre-ECMO):Highest pre-ductal PaO2: FORMTEXT ????? mm Hg (or kPascal FORMCHECKBOX )O2 sat: FORMTEXT ????? %Highest post-ductal PaO2: FORMTEXT ????? mm Hg (or kPascal FORMCHECKBOX )O2 sat: FORMTEXT ????? %Highest PaCO2: FORMTEXT ????? mm Hg (or kPascal FORMCHECKBOX )Lowest PaCO2: FORMTEXT ????? mm Hg (or kPascal FORMCHECKBOX ) FORMCHECKBOX Pneumothorax (PRIOR to repair): FORMCHECKBOX Yes FORMCHECKBOX NoIf Yes, Date of diagnosis: FORMTEXT ?????Side of pneumothorax: FORMCHECKBOX Left FORMCHECKBOX Right FORMCHECKBOX BilateralIntervention (check all that apply): FORMCHECKBOX None (observation only) FORMCHECKBOX Thoracentesis FORMCHECKBOX Chest tube FORMCHECKBOX ECMO FORMCHECKBOX Other: FORMTEXT ?????Date of resolution: FORMTEXT ?????Side of Diaphragmatic Hernia: FORMCHECKBOX Left FORMCHECKBOX Right FORMCHECKBOX Bilateral FORMCHECKBOX CentralRepair: Done on Date: FORMTEXT ????? Time: FORMTEXT ????? FORMCHECKBOX Not repairedLocation where repair done: FORMCHECKBOX OR/Operating theatre FORMCHECKBOX NICU/Intensive care unitDiaphragm Defect: FORMCHECKBOX A FORMCHECKBOX B FORMCHECKBOX C FORMCHECKBOX D (Have surgeon identify which diagram (A, B, C, D) most closely approximates defect noted intra-operatively. Orientation: diagram is drawn with the diaphragm (defect) on the patient’s left and you are looking up from the abdomen towards the chest)Type of Diaphragm Repair: FORMCHECKBOX Primary FORMCHECKBOX Patch If patch: FORMCHECKBOX PTFE FORMCHECKBOX Alloderm FORMCHECKBOX Dacron FORMCHECKBOX Mesh plug FORMCHECKBOX Muscle flap FORMCHECKBOX Surgisis FORMCHECKBOX Other: FORMTEXT ?????Hernia Sac: FORMCHECKBOX Yes FORMCHECKBOX NoLiver: FORMCHECKBOX Chest FORMCHECKBOX AbdomenApproach: FORMCHECKBOX Subcostal FORMCHECKBOX Thoracic FORMCHECKBOX Thoracoscopic FORMCHECKBOX Laparoscopic FORMCHECKBOX Both subcostal and Thoracic FORMCHECKBOX Other: FORMTEXT ????? Hepato-pulmonary fusion: FORMCHECKBOX Yes FORMCHECKBOX No Pulmonary sequestration: FORMCHECKBOX Yes FORMCHECKBOX No ECMO Data: FORMCHECKBOX Placed on ECMO: started at Date: FORMTEXT ????? Time: FORMTEXT ????? ended at Date: FORMTEXT ????? Time: FORMTEXT ?????ECMO Mode: FORMCHECKBOX VA FORMCHECKBOX VA (+V) FORMCHECKBOX VV (DL) FORMCHECKBOX VV to VALast ABG (blood gas) before going on ECMO:PaO2: FORMTEXT ????? mm Hg (or kPascal) FORMCHECKBOX Preductal FORMCHECKBOX PostductalO2 Sat: FORMTEXT ????? % FORMCHECKBOX Preductal FORMCHECKBOX PostductalPaCO2: FORMTEXT ????? mm Hg (or kPascal) FORMCHECKBOX Second ECMO run: started at Date: FORMTEXT ????? Time: FORMTEXT ????? ended at Date: FORMTEXT ????? Time: FORMTEXT ?????ECMO Mode: FORMCHECKBOX VA FORMCHECKBOX VA (+V) FORMCHECKBOX VV (DL) FORMCHECKBOX VV to VAOther Surgical Procedures (Check all that apply and provide dates): FORMCHECKBOX Repair of recurrent CDHDate: FORMTEXT ????? FORMCHECKBOX Gastrostomy tube (no fundoplication)Date: FORMTEXT ????? FORMCHECKBOX Fundoplication, G-tube FORMCHECKBOX Yes FORMCHECKBOX NoDate: FORMTEXT ????? FORMCHECKBOX Lysis of adhesions / surgery for SBODate: FORMTEXT ????? FORMCHECKBOX Closure of ventral herniaDate: FORMTEXT ????? FORMCHECKBOX Cardiac catheterizationDate: FORMTEXT ????? FORMCHECKBOX Cardiac surgery (details: FORMTEXT ?????)Date: FORMTEXT ????? FORMCHECKBOX Other surgery (details: FORMTEXT ?????)Date: FORMTEXT ?????Outcome: FORMCHECKBOX Death: Date of death: FORMTEXT ????? Time of death: FORMTEXT ????? FORMCHECKBOX Survived to discharge home or transfer FORMCHECKBOX Transferred out of NICU/Intensive Care Unit on Date: FORMTEXT ?????Discharged home or transferred on Date: FORMTEXT ????? - disposition: FORMCHECKBOX Discharged home FORMCHECKBOX Transferred to another hospital FORMCHECKBOX Transferred to in-hospital service for long-term carePulmonary Status at 30 Days of Age: FORMCHECKBOX Extubated and on room air FORMCHECKBOX Extubated and on nasal cannula FORMCHECKBOX Nasal CPAP FORMCHECKBOX Mechanical ventilation FORMCHECKBOX ECMOPulmonary status at Time of discharge/transfer: FORMCHECKBOX Extubated and on room air FORMCHECKBOX Extubated and on nasal cannula FORMCHECKBOX Nasal CPAP FORMCHECKBOX Mechanical ventilation Eye exam: FORMCHECKBOX Normal FORMCHECKBOX Abnormal FORMCHECKBOX Not doneHead U/S: FORMCHECKBOX Normal FORMCHECKBOX Abnormal FORMCHECKBOX Not done Head CT: FORMCHECKBOX Normal FORMCHECKBOX Abnormal FORMCHECKBOX Not doneCranial MRI: FORMCHECKBOX Normal FORMCHECKBOX Abnormal FORMCHECKBOX Not doneHearing eval: FORMCHECKBOX Normal FORMCHECKBOX Abnormal FORMCHECKBOX Not doneAt Time of (or closest to) discharge: Weight: FORMTEXT ????? kg Length: FORMTEXT ????? cm Head circumference: FORMTEXT ????? cmFeeding at Time of discharge/transfer: FORMCHECKBOX PO (> 50 % feeds po) FORMCHECKBOX NG (≥ 50 % feeds by gavage) FORMCHECKBOX GT (≥ 50 % feeds by G-tube)Date on full enteral feeds: FORMTEXT ?????GER (Gastro-esophageal reflux) diagnosed: FORMCHECKBOX Yes FORMCHECKBOX No Discharge medications (Check all that apply):Respiratory: FORMCHECKBOX Diuretics FORMCHECKBOX Inhaled bronchodilators FORMCHECKBOX Inhaled steroids FORMCHECKBOX iNO FORMCHECKBOX Prostacyclin FORMCHECKBOX Sildenafil FORMCHECKBOX Theophylline FORMCHECKBOX Antibiotics FORMCHECKBOX Seizure medications FORMCHECKBOX Sedatives/analgesicsGastrointestinal: FORMCHECKBOX Prokinetic agents FORMCHECKBOX Antacids(ranitidine, proton pump inhibitors, etc.) FORMCHECKBOX Erythromycin (used to increase motility) FORMCHECKBOX HyperalimentationCardiac: FORMCHECKBOX Digoxin FORMCHECKBOX Captopril FORMCHECKBOX Aspirin(Any medications not listed here, please list in comments section below)Additional Comments about this Patient: FORMTEXT ?????ULTRASOUND AND MRI DATA COLLECTION: ONLY FOR PRENATALLY DIAGNOSED CDHEDC (Estimated Date of Conception) for fetus: FORMTEXT ?????Maternal: Age: FORMTEXT ????? (years) G FORMTEXT ????? P FORMTEXT ?????FIRST PRENATAL ULTRASOUND: Date: FORMTEXT ?????Gestational age at time of exam: FORMTEXT ????? weeksSide of Hernia: FORMCHECKBOX Left FORMCHECKBOX Right FORMCHECKBOX Bilateral FORMCHECKBOX CentralSign of Hydrops: FORMCHECKBOX None FORMCHECKBOX Skin edema FORMCHECKBOX Pleural effusion FORMCHECKBOX Pericardial effusion FORMCHECKBOX Ascites Liver Herniation: FORMCHECKBOX No FORMCHECKBOX Yes- If yes, FORMCHECKBOX <1/3 thoracic cavity height FORMCHECKBOX ≥1/3 thoracic cavity height% herniation if known: FORMTEXT ????? %LHR: FORMTEXT ????? (range 0.5 – 2.5)Method used: FORMCHECKBOX Method A FORMCHECKBOX Method B FORMCHECKBOX Method C FORMCHECKBOX Unknown/not statedObserved/Expected LHR: FORMTEXT ????? (range 0 – 150 %)Lung/Thorax (L/T) ratio: FORMTEXT ????? (range 0 – 0.5)Stomach Herniation (Kitano Method- see manual for explanation): FORMCHECKBOX Grade 0 FORMCHECKBOX Grade 1 FORMCHECKBOX Grade 2 FORMCHECKBOX Grade 3Stomach Herniation (Cordier Method- see manual for explanation): FORMCHECKBOX Grade 1 FORMCHECKBOX Grade 2 FORMCHECKBOX Grade 3 FORMCHECKBOX Grade 4To calculate Modified McGoon index:Diameter Aorta: FORMTEXT ????? mmDiameter Left Pulmonary Artery: FORMTEXT ????? mmDiameter Right Pulmonary Artery: FORMTEXT ????? mmWas tracheal occlusion done? FORMCHECKBOX No FORMCHECKBOX YesIf yes, at what gestational age (weeks) was occlusion done: FORMTEXT ?????If yes, at what gestational age (weeks) was occlusion removed: FORMTEXT ?????Other malformations? FORMCHECKBOX No FORMCHECKBOX Yes - If yes, provide details: FORMTEXT ?????SECOND PRENATAL ULTRASOUND: Date: FORMTEXT ?????Gestational age at time of exam: FORMTEXT ????? weeksSide of Hernia: FORMCHECKBOX Left FORMCHECKBOX Right FORMCHECKBOX Bilateral FORMCHECKBOX CentralSign of Hydrops: FORMCHECKBOX None FORMCHECKBOX Skin edema FORMCHECKBOX Pleural effusion FORMCHECKBOX Pericardial effusion FORMCHECKBOX Ascites Liver Herniation: FORMCHECKBOX No FORMCHECKBOX Yes- If yes, FORMCHECKBOX <1/3 thoracic cavity height FORMCHECKBOX ≥1/3 thoracic cavity height% herniation if known: FORMTEXT ????? %LHR: FORMTEXT ????? (range 0.5 – 2.5)Method used: FORMCHECKBOX Method A FORMCHECKBOX Method B FORMCHECKBOX Method C FORMCHECKBOX Unknown/not statedObserved/Expected LHR: FORMTEXT ????? (range 0 – 150 %)Lung/Thorax (L/T) ratio: FORMTEXT ????? (range 0 – 0.5)Stomach Herniation (Kitano Method- see manual for explanation): FORMCHECKBOX Grade 0 FORMCHECKBOX Grade 1 FORMCHECKBOX Grade 2 FORMCHECKBOX Grade 3Stomach Herniation (Cordier Method- see manual for explanation): FORMCHECKBOX Grade 1 FORMCHECKBOX Grade 2 FORMCHECKBOX Grade 3 FORMCHECKBOX Grade 4To calculate Modified McGoon index:Diameter Aorta: FORMTEXT ????? mmDiameter Left Pulmonary Artery: FORMTEXT ????? mmDiameter Right Pulmonary Artery: FORMTEXT ????? mmOther malformations? FORMCHECKBOX No FORMCHECKBOX Yes - If yes, provide details: FORMTEXT ?????________________________________________________________________________PRENATAL MRI: Date: FORMTEXT ?????Gestational age at time of exam: FORMTEXT ????? weeksSide of Hernia:? FORMCHECKBOX Left?? ? FORMCHECKBOX Right? ?? FORMCHECKBOX Bilateral FORMCHECKBOX CentralLung volumes:? Left FORMTEXT ????? ml?? Right FORMTEXT ????? ml Total (left + right) FORMTEXT ????? mlTV: Thoracic volume FORMTEXT ????? (ml)MV: Mediastinal volume FORMTEXT ????? (ml)Percent Predicted Lung volume (PPLV) FORMTEXT ????? %PPLV = Total lung volume * 100 / (Thoracic volume – Mediastinal volume)O/E total lung volume: FORMTEXT ?????Liver: estimated percent of liver in chest: FORMTEXT ????? % (0 = all liver in abdomen / 100 = all liver in chest)Grading of location of the fetal stomach?(Usui Method- see manual for explanation):Stomach Herniation:??? FORMCHECKBOX Grade 0?????? FORMCHECKBOX ?Grade 1?????? FORMCHECKBOX ?Grade 2?????? FORMCHECKBOX ?Grade 3Other malformations?? FORMCHECKBOX ?No???? FORMCHECKBOX ?Yes - If yes, provide deta ................
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