Cardiovascular, Pulmonary, and Renal 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 |
Neurology, Quality of Life, and Health Services Scope
Element Considered | Final Measures in Toolkit |
---|---|
Neurologic Complications | |
Silent Stroke | Stroke Impact/Outcome |
Overt Stroke | Functionality after Stroke |
Transcranial Doppler (TCD) | Stroke Risk in Children with Sickle Cell Disease |
Diffusion Tensor Imaging (DTI) | |
Angiography | |
Non-stroke neurologic complications | |
Cognitive complications
|
Adaptive Behavior/Adaptive Function |
Intelligence Scale | |
Transfusion | |
Acute and Chronic Pain | |
Interference | |
Use of Substances of Addiction
|
|
Transfusion | |
Quality of Life and Patient-Reported Outcomes | |
Functional measures of well-being
|
Quality of Life in Sickle Cell Disease |
Self-efficacy in Sickle Cell Disease | |
Pain
|
|
Activities of Daily Living
|
|
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 |
Curative Therapies Scope
Element Considered | Final Measures in Toolkit |
---|---|
Indications for Transplant | |
Pretransplant Evalution | Prothrombin Time |
Left Ventricular Global Longitudinal Strain by Speckle Tracking Echocardiography | |
Determination of Liver Iron Concentration by R2* | |
Determination of Liver Iron Concentration by Ferriscan | |
Determination of Liver Fibrosis by Magnetic Resonance Elastography (MRE) (Supplemental Information) | |
Recurrent Priapism | |
Psychosocial Assessment of Candidates for Transplantation | |
Fibrosis Staging of Liver Biopsy (Supplemental Information) | |
Determination of Liver Fibrosis by Transient Elastography (Supplemental Information) | |
Myocardia Iron Estimation Using T2* MRI (Supplemental Information) | |
Description of transplant conditioning regimen | Sickle Cell Disease Transplant Conditioning Regimen |
Transplant stem cell source | Sickle Cell Disease Stem Cell Source and Cell Manipulation |
Effect of transplant on donor derived erythropoiesis | |
Endpoints for curative therapy (complications) | White Cell Chimerism and Graft Failure |
Graft versus Host Disease | |
Pretransfusion evaluation | |
Endpoints for Transfusion | Pre-transfusion Antibody Testing |
Transfusion Reaction Reporting | |
Thyroid Stimulating Hormone (hTSH) in Serum | |
Endpoints for transplant (complications) | Determination of Liver Iron Concentration by R2* |
Determination of Liver Iron Concentration by Ferriscan | |
Determination of Liver Fibrosis by Magnetic Resonance Elastography (MRE) (Supplemental Information) | |
Fibrosis Staging of Liver Biopsy (Supplemental Information) | |
Determination of Liver Fibrosis by Transient Elastography (Supplemental Information) | |
Myocardia Iron Estimation Using T2* MRI (Supplemental Information) |
Pain Scope
Element Considered | Final Measures in Toolkit |
---|---|
Intensity | Pain Intensity |
Location | Pain Location |
Pain Quality | Pain Quality Descriptors |
Anxiety: Pain-related, state, trait, disorder | |
Catastrophizing | Pain Catastrophizing |
Coping | Pain Coping |
Emotional | |
Psychosocial | |
Self-efficacy | |
Social | |
Care utilization | |
Frequency | |
Pain Burden | Pain Burden |
Physical Interference/Impact | Pain Interference |
Physical Mobility | |
Medication use | Treatment Response: Medication Use |
Patient reported treatment, satisfaction, or effectiveness | Patient Reported Impression of Change |
Psychosocial and Social Determinants of Health Scope
Element Considered | Final Measures in Toolkit |
---|---|
Transition Readiness | Sickle Cell Disease Transition Readiness Assessment |
Sickle Cell Disease Transition Readiness Assessment (SI) | |
Response to Stress | Sickle Cell Disease Responses to Stress - Youth |
Sickle Cell Disease Responses to Stress - Parent Report | |
Self-Management | Sickle Cell Disease Self-Management - Adolescent Skills Checklist |
Sickle Cell Disease Self-Management - Caregiver Skills Checklist | |
Stigma | Sickle Cell Disease Health-Related Stigma - Child |
Sickle Cell Disease Health-Related External Stigma - Adolescent and Adult | |
Sickle Cell Disease Health-Related Internal Stigma - Adolescent and Adult | |
Trust in Medical Care and Research | Trust in the Medical Professional - Adult |
Trust in Medical Researchers - 12-item | |
Trust in Medical Researchers - 4-item | |
Grief | Inventory of Complicated Grief |
Reactions to Loss Scale | |
Resilience | Resilience |
Spiritual Coping | Religious Behaviors and Congregational Support |
Attitude Toward Illness | Attitude Toward Illness - Child (SI) |
Self-Efficacy | General Self-Efficacy - Child (SI) |
General Self-Efficacy - Adolescent (SI) | |
General Self-Efficacy - Child Parent Report (SI) | |
General Self-Efficacy - Adult (SI) | |
Illness Identity | Illness Identity Questionnaire (SI) |
Medication Adherence | Medication Adherence (SI) |
Optimism | Optimism (SI) |
Self-Perception | Self-Perception Profile - Child (SI) |
Self-Perception Profile - Adolescent (SI) | |
Self-Perception Profile - Adult (SI) |
Genitourinary Scope
Element Considered | Final Measures in Toolkit |
---|---|
Puberty | |
Menstruation | Sickle Cell Disease Pain Associated with Menstruation |
Sickle Cell Disease Pain Associated with Menstruation - Quality of Life | |
Contraception | Female Contraception Use |
Priapism | Priapism |
Fertility | Fertility and Quality of Life |
Fertility History | |
Infertility | |
Testosterone Deficiency | Testosterone Level |
Sexual Function | Sexual Function |
Sexual, Romantic, and Partner Satisfaction | |
Exogenous hormone use | Hormone Therapy |
Menopause | Perimenopausal Symptoms |
Voiding Dysfunction | Overactive Bladder |