Sickle Cell Disease WG1: Cardiovascular, Pulmonary, and Renal Complications Scope

Element Considered Final Measures in Toolkit
N-terminal-pro-brain natriuretic peptide (NT-proBNP) N-terminal-pro-brain natriuretic peptide (NT-proBNP)
Cardiovascular Complications
Right Heart Catheterization (RHC) Right Heart Catheterization (RHC)
Iron overload Serum or Plasma Ferritin
Hemolytic Component Reticulocyte Count
Haptoglobin Level
Bilirubin Level
Lactate Dehydrogenase Level
Red Blood Cell Aspartate Aminotransferase Level
Brachial Artery Relaxivity
Short Axis Function
Pulmonary Complications
Asthma/airways disease Lung Function - Diffusion Capacity
Lung Function - Lung Volume
Acute chest syndrome Chest X-ray
Sleep Disordered Breathing
Other Complications
Temperature Body Temperature
Liver iron

Sickle Cell Disease Neurology, Quality of Life, and Health Services Specialty Area Scope

Element Considered Final Measures in Toolkit
Neurologic Complications
Silent Stroke
Overt Stroke
Stroke Impact/Outcome
Functionality after Stroke
Transcranial Doppler (TCD) Stroke Risk in Children with Sickle Cell Disease
Diffusion Tensor Imaging (DTI)
Non-stroke neurologic complications
Cognitive complications
- Dementia, Visual Memory, Working Memory, Executive Function, Attention
Adaptive Behavior/Adaptive Function
Intelligence Scale
Acute and Chronic Pain
Use of Substances of Addiction
- Marijuana use
Quality of Life and Patient-Reported Outcomes
Functional measures of well-being
- Fatigue, pain, pain interference, depression, anxiety, mobility
Quality of Life in Sickle Cell Disease
Self-efficacy in Sickle Cell Disease
- Treatment, symptoms, communication, worry (pediatric)
Activities of Daily Living
- Physical, social, emotional, school functioning
Health Services
Quality of Care
- Hospitalization, re-hospitalization
- TCD, treatments, medications
Quality of Care
Preventive care (flu shots, hydroxyurea)
Acute Care
Quality indicators for pediatric sickle cell disease