Outcomes prioritized by the ASH Guideline Panel on Cardiopulmonary and Kidney Disease
Critical outcomes for decision-making . |
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Q1. |
• Test accuracy of ECHO to diagnose PH compared with cardiac catheterization |
• Mortality |
• Change in patient management |
• Patient desire to know about abnormal screening |
• Rate of cardiac catheterization |
• Anxiety related to abnormal test |
Q2. |
• Appropriate treatment in appropriate patients |
• Mortality |
• Time to diagnosis |
• Complications related to cardiac catheterization (eg, bleeding, clots, infection, arrhythmia, and pain) |
• Progression of cardiac dysfunction |
Q3. |
• Mortality |
• Quality of life |
• PH therapy side effects (eg, hypotension, flushing/headache, injection-related pain, liver dysfunction) |
• Oxygen requirement |
• Dyspnea, exercise tolerance, 6MWD, and NYHA functional class |
• Transfusion side effects (eg, alloimmunization, need for and complications related to IV access, iron overload) |
• Change in pain episodes |
• Burden of treatment |
• Cardiac function |
• Hospitalization rate |
• Syncope |
Q4. |
• Rate of cardiac catheterization |
• Mortality |
• Change in patient management |
• Patient desire to know about abnormal screening |
• Anxiety related to abnormal test |
Q5. |
• Quality of life |
• Mortality |
• Cardiovascular outcomes |
• Acute and chronic pain rate |
• Acute chest syndrome rate |
• Nocturnal enuresis |
• Priapism |
• Burden of treatment |
• Patient desire to know about abnormal screening |
Q6. |
• End-stage renal disease |
• Mortality |
• Quality of life/function |
• Burden of treatment |
• Worsening proteinuria |
• Hospitalization rate |
• Hyperkalemia |
• Hypotension |
• Acute kidney injury |
Q7. |
• Overall mortality |
• Transplant organ survival |
• Quality of life |
• Transplant-related mortality |
• Treatment burden related to transplant vs dialysis |
• Improvement in anemia |
• Hospitalization |
• Pain episodes |
Q8. |
• Mortality |
• Quality of life |
• Improvement in renal function |
• Improvement in hemoglobin |
• Acute and chronic pain rate |
• Burden of treatment |
• Bone marrow suppression |
• Hypertension |
• Thrombosis |
Q9. |
• Mortality |
• Stroke |
• Cardiovascular events |
• Worsening renal function |
• Quality of life/function |
• Hypotension |
• Burden of treatment (eg, emergency department visits, adherence, monitoring) |
• Medication side effects |
• Hospitalization rate |
Q10. |
• Major bleeding |
• Risk of recurrent pulmonary embolism |
• Risk of recurrent deep vein thrombosis |
• Quality of life |
• Mortality |
• SCD-related complications |
• Treatment burden |
• Postthrombotic syndrome |
Critical outcomes for decision-making . |
---|
Q1. |
• Test accuracy of ECHO to diagnose PH compared with cardiac catheterization |
• Mortality |
• Change in patient management |
• Patient desire to know about abnormal screening |
• Rate of cardiac catheterization |
• Anxiety related to abnormal test |
Q2. |
• Appropriate treatment in appropriate patients |
• Mortality |
• Time to diagnosis |
• Complications related to cardiac catheterization (eg, bleeding, clots, infection, arrhythmia, and pain) |
• Progression of cardiac dysfunction |
Q3. |
• Mortality |
• Quality of life |
• PH therapy side effects (eg, hypotension, flushing/headache, injection-related pain, liver dysfunction) |
• Oxygen requirement |
• Dyspnea, exercise tolerance, 6MWD, and NYHA functional class |
• Transfusion side effects (eg, alloimmunization, need for and complications related to IV access, iron overload) |
• Change in pain episodes |
• Burden of treatment |
• Cardiac function |
• Hospitalization rate |
• Syncope |
Q4. |
• Rate of cardiac catheterization |
• Mortality |
• Change in patient management |
• Patient desire to know about abnormal screening |
• Anxiety related to abnormal test |
Q5. |
• Quality of life |
• Mortality |
• Cardiovascular outcomes |
• Acute and chronic pain rate |
• Acute chest syndrome rate |
• Nocturnal enuresis |
• Priapism |
• Burden of treatment |
• Patient desire to know about abnormal screening |
Q6. |
• End-stage renal disease |
• Mortality |
• Quality of life/function |
• Burden of treatment |
• Worsening proteinuria |
• Hospitalization rate |
• Hyperkalemia |
• Hypotension |
• Acute kidney injury |
Q7. |
• Overall mortality |
• Transplant organ survival |
• Quality of life |
• Transplant-related mortality |
• Treatment burden related to transplant vs dialysis |
• Improvement in anemia |
• Hospitalization |
• Pain episodes |
Q8. |
• Mortality |
• Quality of life |
• Improvement in renal function |
• Improvement in hemoglobin |
• Acute and chronic pain rate |
• Burden of treatment |
• Bone marrow suppression |
• Hypertension |
• Thrombosis |
Q9. |
• Mortality |
• Stroke |
• Cardiovascular events |
• Worsening renal function |
• Quality of life/function |
• Hypotension |
• Burden of treatment (eg, emergency department visits, adherence, monitoring) |
• Medication side effects |
• Hospitalization rate |
Q10. |
• Major bleeding |
• Risk of recurrent pulmonary embolism |
• Risk of recurrent deep vein thrombosis |
• Quality of life |
• Mortality |
• SCD-related complications |
• Treatment burden |
• Postthrombotic syndrome |