Pre-Implant. Demographics Height:* in cm ST = Weight:* lbs kgs ST = Blood type:*

Transcription

1 Pre-Implant Demographics Height:* in cm ST = Weight:* lbs kgs ST = Blood type:* Medical Support Status Current Device Strategy at time of implant:* Enter List Date:* mm/dd/yyyy ST= Concerns / Contraindications Overall Status: Is condition present? Patient (family) does not want transplant* YES NO Musculoskeletal limitation to ambulation (includes skeletal myopathy)* YES NO Limitation for transplant listing? * YES NO Contraindication to immunosuppression* YES NO Allosensitization * YES NO Frailty* YES NO Chronic renal disease* YES NO Cardiothoracic issues: Frequent ICD shocks* YES NO Pulmonary disease* YES NO Pulmonary hypertension* YES NO Recent pulmonary embolus* YES NO History of atrial arrhythmia * YES NO Unfavorable mediastinal anatomy (This includes sternotomies, sternal resection, radiation, flail chest, etc)* YES NO Enter # of Sternotomies:* 1

2 Thoracic aortic disease* YES NO Tracheostomy* YES NO Plastic Bronchitis* YES NO Nutritional/GI/Genetics: Large BMI * YES NO Severe Diabetes* YES NO Malnutrition/cachexia* YES NO History of GI ulcers* YES NO History of hepatitis* YES NO Liver dysfunction* YES NO Anasarca* YES NO Protein losing enteropathy* YES NO Genetic Syndrome* YES NO Genetic syndrome* Other:* Vascular issues: Heparin-induced thrombocytopenia* YES NO Chronic coagulopathy* YES NO Major stroke* YES NO Other cerebrovascular disease* YES NO Peripheral vascular disease* YES NO 2

3 Oncology/infection issues: History of solid organ cancer* YES NO History of lymphoma, leukemia* YES NO History of bone marrow transplant (BMT)* YES NO History HIV* YES NO Chronic infectious concerns* YES NO Psychosocial issues (If patient is <10 years old at time of implant then these answers pertain to the primary guardian).: Limited congition/understanding* YES NO Limited social support* YES NO Repeated non-compliance* YES NO History of illicit drug use* YES NO History of alcohol abuse* YES NO Narcotic dependence* YES NO History of smoking* YES NO Currently smoking * YES NO Severe depression* YES NO Other major psychiatric diagnosis* YES NO Neurological/developmental abnormalities* YES NO Other co-morbidity* YES NO Time since first cardiac diagnosis: Was the patient treated for heart failure prior to admission?:* If yes, number of heart failure YES NO UNK 3

4 hospitalizations in the last year:* Primary cardiac diagnosis:* Dilated Cardiomyopathy Restrictive Cardiomyopathy Congenital Heart Disease: Single Ventricular Other:* Previous cardiac operation (check all that apply):* None CABG Aneuryomectomy (DOR) Aortic Valve replacement / repair Mitral valve replacement / repair Triscuspid replacement /repair Congenital card surg LVAD RVAD TAH Previous heart transplant Previous ECMO Other, specify (INCLUDE ONLY OPERATIONS ACTUALLY PERFORMED ON HEART OR GREAT VESSELS) If congenital cardiac surg then check all that apply:* Congenitally Corrected Transposition Repair (double switch) Congenitally Corrected Transposition Repair (classic) PA Banding TOF/DORV/RVOTO Repair Ebstein's Anomaly Repair VSD Repair Norwood Stage I Glenn Procedure Fontan Procedure d- Transposition of the Great Vessels Repair - arterial switch operation d- Transposition of the Great Vessels Repair - atrial switch (Senning/Mustard) Truncus Arteriosus Repair Complete AV Septal Defect Repair Hybrid Repair Other, specify Admitting Diagnosis or Planned Implant:* Non-Cardiac medical problem:* GI (nausea, vomiting, diarrhea) Respiratory (SOB, wheezing, respiratory failure) FTT Lethargy Other, specify Clinical Events and Interventions this hospitalization (Pre-implant):* CABG Aortic Valve replacement/repair Mitral Valve replacement/repair Congenital cardiac surg Other surgical procedures IABP ECMO 4

5 If congenital cardiac surg then check all that apply:* Other surgical procedure:* Infection type* Location of infection:* Other, specify:* LVAD RVAD TAH Dialysis Ultrafiltration Feeding tube Intubation Major MI Major Infections/Positive blood cultures None Escalation to CPAP Arrythmia Previous ECMO Previous heart transplant Treatment of Rejection Peritoneal Drain Non-cardiac procedure Congenitally Corrected Transposition Repair (double switch) Congenitally Corrected Transposition Repair (classic) PA Banding TOF/DORV/RVOTO Repair Ebstein's Anomaly Repair VSD Repair Norwood Stage I Glenn Procedure Fontan Procedure d- Transposition of the Great Vessels Repair - arterial switch operation d- Transposition of the Great Vessels Repair - atrial switch (Senning/Mustard) Truncus Arteriosus Repair Complete AV Septal Defect Repair Hybrid Repair Other, specify Best Functional Capacity within 24 hours of implant Paralyzed:* YES NO Intubated:* YES NO Ambulating:* YES NO Primary Nutrition:* IV therapy at implant* YES NO UNK IV inotrope therapy agents (check all that apply):* Dobutamine Dopamine Milrinone Levosimendan Epinephrine Norepinephrine 5

6 Isoproterenol Vasopressin Nitroprusside Fenoldopam Neseritide Other, specify Loop diuretics:* YES NO UNK If yes, enter dosage:* mg/day ST= If dose is entered, then check type of loop diuretic (check all that apply):* Furosemide Torsemide Bumetanide Other PEDIMACS Patient Profile at time of implant decision:* 1 "Critical cardiogenic shock" describes a patient who is "crashing and burning", in which a patient has life-threatening hypotension and rapidly escalating inotropic pressor support, with critical organ hypo perfusion often confirmed by worsening acidosis and lactate levels. This patient can have modifier A or TCS (see 'Modifiers' below) 2 "Progressive decline" describes a patient who has been demonstrated "dependent" on inotropic support but nonetheless shows signs of continuing deterioration in nutrition, renal function, hepatic function, respiratory function, fluid retention, nutrition, tachyarrhythmia, or other major status indicator. Patient profile 2 can also describe a patient with refractory volume overload, perhaps with evidence of impaired perfusion, in whom inotropic infusions cannot be maintained due to tachyarrhythmia, clinical ischemia, or other intolerance. This patient can have modifiers A or TCS. 3 "Stable but inotrope dependent" describes a patient who is clinically stable on mild-moderate doses of intravenous inotropes (or has a temporary circulatory support device) after repeated documentation of failure to wean without symptomatic hypotension, worsening symptoms, or progressive organ dysfunction (usually renal). It is critical to monitor nutrition, renal function, fluid balance, and overall status carefully in order to distinguish between a patient who is truly stable at Patient Profile 3 and a patient who has unappreciated decline rendering them Patient Profile 2. This patient may be either at home or in the hospital. Patient Profile 2 can have modifier A, and if in the hospital with circulatory support can have modifier TCS. If patient is at home most of the time on outpatient inotropic infusion, this patient can have a modifier FF if he or she frequently returns to the hospital. 4 "Resting symptoms" describes a patient who is at home on oral therapy but frequently has symptoms of congestion at rest or with ADL. He or she may have orthopnea, shortness of breath during ADL such as dressing or bathing, gastrointestinal symptoms (abdominal discomfort, nausea, poor appetite), disabling ascites or severe peripheral edema (extremity or facial). This patient should be carefully considered for more intensive management and surveillance programs, by which some may be recognized to have poor compliance that would compromise outcomes with any therapy. This patient can have modifiers A and/or FF. 5 "Exertion Intolerant" describes a patient who is comfortable at rest but unable to engage in any activity, living predominantly within the house or housebound. This patient has no congestive symptoms, but may have chronically elevated volume status, frequently with renal dysfunction, and may be characterized as exercise intolerant. This patient can have modifiers A and/or FF. 6 "Exertion Limited" also describes a patient who is comfortable at rest without evidence of fluid overload, but who is able to do some mild activity. Activities of daily living are comfortable and minor activities outside the home such as visiting friends or going to a restaurant can be performed, but fatigue results within a few minutes or any meaningful physical exertion. This patient has occasional episodes of worsening symptoms and is likely to have had a hospitalization for heart failure within the past year. This patient can have modifiers A and/or FF. 7 "Advanced NYHA Class 3" or "Ross Class III" describes a patient who is clinically stable with a reasonable level of comfortable activity, despite history of previous decompensation that is not recent. This patient is usually able to walk more than a block. Any decompensation requiring intravenous diuretics or hospitalization within the previous month should make this person a Patient Profile 6 or lower. This patient may have a modifier A only. Modifier 'A' - Arrythmia* YES NO UNK Modifier 'TCS' - Temporary Circulatory Support* YES NO UNK Modifier 'FF' - Frequent Flyer* YES NO UNK Primary Reason: Clinical manifestation 6

7 of heart failure prompting VAD insertion according to the implanting physician (select primary reason):* Check all that apply:* Secondary Reason(s): Clinical manifestations of heart failure prompting VAD insertion according to the implanting physician (check all other reasons that apply that are not the primary reason selected above):* Emesis or inadequate calories (<70% prescribed) requiring enteral feeding tube placement Recurrent emesis with adequate caloric intake despite feeding tube placement Inadequate caloric intake (with or without emesis) despite feeding tube placement Requiring parenteral (IV) nutrition Decline in renal function Decline in hepatic function Decline in respiratory function Refractory fluid retention/volume overload Decline in cardiac output (by exam, mixed venous saturation, or cath) prior to onset of worsening acidosis/lactate Decline in nutrition/feeding intolerance, if so check all that apply Incessant severe sinus tachycardia Worsening tachyarrhythmia Other, please specify Not reported Check all that apply:* Emesis or inadequate calories (<70% prescribed) requiring enteral feeding tube placement Recurrent emesis with adequate caloric intake despite feeding tube placement Inadequate caloric intake (with or without emesis) despite feeding tube placement Requiring parenteral (IV) nutrition Hemodynamics (Prior to implant - closest to implant but not in OR) Peripheral edema* YES NO UNK Ascites:* YES NO UNK ECG rhythm (cardiac rhythm):* Echo Findings - closest to implant Systemic AV Valve Regurgitation:* Right AV Valve Regurgitation (Pulmonary):* Aortic regurgitation:* Systemic Ventricle Ejection Fraction:* LVEDD:* cm ST= RV Function:* Was there thrombus identified by ECHO?* If yes, please check all that apply:* YES NO RA - Right Atrium RV - Right Ventricle LA - Left Atrium SVC - Superior Vena Cava IVC - Inferior Vena Cava 7

8 Invasive Hemodynamics - closest to implant (within one month of implant) Date of Measurement:* mm/dd/yyyy ST= Heart ST= rate:* beats per min Pulmonary artery systolic pressure:* mm Hg ST= Pulmonary artery diastolic pressure:* mm Hg ST= Mean RA Pressure:* mm Hg ST= PVRI:* wood units ST= Mean Pulmonary artery wedge mm Hg ST= pressure OR LVEDP:* Cardiac Index:* L/min/m 2 ST= Current ICD device in place:* YES NO UNK Cardiac Resynchronization Therapy (CRT):* YES NO UNK Laboratory - closest to implant (or appropriate guidance) Sodium:* mmol/l ST= Potassium:* meq/l ST= Blood urea nitrogen:* mg/dl ST= Creatinine:* mg/dl ST= SGPT/ALT (alanine u/l ST= aminotransferase/alt):* SGOT/AST (aspartate u/l ST= aminotransferase/ast):* LDH:* U/L ST= Total bilirubin:* mg/dl ST= Bilirubin direct:* mg/dl ST= Bilirubin indirect:* mg/dl ST= Albumin:* g/dl ST= Pre-albumin:* mg/dl ST= Total Cholesterol:* mg/dl ST= If value is outside given range please see 'status' drop down field Brain natriuretic peptide BNP:* pg/ml ST= If value is outside given range please see 'status' drop down field NT pro brain natriuretic peptide pg/ml ST= Pro-BNP:* White blood cell count:* K/uL ST= Reticulocyte count:* % ST= Hemoglobin:* g/dl ST= Platelets:* K/uL ST= INR:* international units ST= Uric Acid: * mg/dl ST= Lymphocyte Count: * % ST= Does the patient have a history YES NO UNK 8

9 of lupus anticoagulant?:* Medical Condition NYHA class:* Ross Classification of Congestive Heart Failure (patient < 2 yrs of age):* Class I: No limitation of physical activity; physical activity does not cause fatigue, palpitation or shortness of breath. Class II: Slight limitation of physical activity; comfortable at rest, but ordinary physical activity results in fatigue, palpitations or shortness of breath. Class III: Marked limitation of physical activity; comfortable at rest, but less than ordinary activity causes fatigue, palpitation or shortness of breath. Class IV: Unable to carry on minimal physical activity without discomfort; symptoms may be present at rest. Ross class II:* Mild tachypnea with feeds in infant Mild diaphoresis with feeds in infant Dyspnea on exercise in older children Ross class III:* Marked tachypnea with exertion or with feeding Marked diaphoresis with exertion or with feeding Ross class IV:* Tachypnea Retractions Grunting Diaphoresis Exercise Function - closest to implant (or appropriate guidance) 6 minute walk:* feet ST= Gait Speed (1st 15 foot walk):* seconds ST= Peak VO2 Max: Maximum volume ml/kg/min ST= of oxygen the body can consume during exercise:* R Value at peak:* % ST= PEDSQOL: Child Did the child complete a form?:* YES NO UNK Please enter the reason the PEDSQOL form was not completed* Administrative (check specific reason):* Please select the "Child" form* Too Sick Administrative ABOUT MY HEALTH AND ACTIVITIES (problems with...) 1. It is hard for me to walk more than one block:* 2. It is hard for me to run:* 3. It is hard for me to do sports activity or exercise:* 4. It is hard for me to lift something heavy:* 5. It is hard for me to take a bath or shower by myself:* 9

10 6. It is hard for me to do chores around the house:* 7. I hurt or ache:* 8. I have low energy:* ABOUT MY FEELINGS (problems with...) 1. I feel afraid or scared:* 2. I feel sad or blue:* 3. I feel angry:* 4. I have trouble sleeping:* 5. I worry about what will happen to me:* HOW I GET ALONG WITH OTHERS (problems with...) 1. I have trouble getting along with other teens:* 2. Other teens do not want to be my friend:* 3. Other teens tease me:* 4. I cannot do things that other teens my age can do:* 5. It is hard to keep up with my peers:* ABOUT SCHOOL (problems with...) 1. It is hard to pay attention in class:* 2. I forget things:* 3. I have trouble keeping up with my schoolwork:* 4. I miss school because of not feeling well:* 5. I miss school to go to the doctor or hospital:* PHYSICAL FUNCTIONING (problems with...) 1. It is hard for you to walk:* 2. It is hard for you to run:* 3. It is hard for you to play sports or exercise:* 4. It is hard for you to pick up big things:* 5. It is hard for you to take a bath or shower:* 6. It is hard for you to do chores (like pick up your toys):* 7. Do you have hurts or aches:* Where?:* 8. Do you ever feel to tired to play:* EMOTIONAL FUNCTIONING (problems with...) 1. Do you feel scared:* 2. Do you feel sad:* 3. Do you feel mad:* 4. Do you have trouble sleeping:* 5. Do you worry about what will happen to you:* 10

11 SOCIAL FUNCTIONING (problems with...) 1. Is it hard for you to get along with other kids:* 2. Do other kids say they do not want to play with you:* 3. Do other kids tease you:* 4. Can other kids do things that you cannot do:* 5. Is it hard for you to keep up when you play with other kids:* SCHOOL FUNCTIONING (problems with...) 1. Is it hard for you to pay attention in school:* 2. Do you forget things:* 3. Is it hard to keep up with schoolwork:* 4. Do you miss school because of not feeling good:* 5. Do you miss school because you have to go to the doctor or hospital:* PEDSQOL: Parent Did the parent complete a form?:* YES NO UNK Please enter the reason the PEDSQOL form was not completed* Administrative (check specific reason):* Please select the "Parent" form* Too Sick Administrative PHYSICAL FUNCTIONING (problems with...) 1. Walking more than one block:* 2. Running:* 3. Participating in sports activity or exercise:* 4. Lifting something heavy:* 5. Taking a bath or shower by him or herself:* 6. Doing chores, like picking up his or her toys:* 7. Having hurts or aches:* 8. Low energy level:* EMOTIONAL FUNCTIONING (problems with...) 1. Feeling afraid or scared:* 3. Feeling sad or blue:* 3. Feeling angry:* 4. Trouble sleeping:* 5. Worrying about what will happen to him or her:* SOCIAL FUNCTIONING (problems with...) 1. Getting along with other children:* 2. Other kids not wanting to be his or her friend:* 11

12 3. Getting teased by other children:* 4. Not able to do things that other children his or her age can do:* 5. Keeping up when playing with other children:* SCHOOL FUNCTIONING (problems with...) 1. Paying attention in class:* 2. Forgetting things:* 3. Keeping up with school activities:* 4. Missing school because of not feeling well:* 5. Missing school to go to the doctor or hospital:* 12