Evidenced Based Management: A Journey for Physicians
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Historical Perspective, Epidemiology, and Methodology
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Overview of the SCD guidelines and chapters
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Process and methodology
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Consensus Statements
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Clinical Practice Guidelines and the institute of Medicine
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Prevention of invasive infection
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Screening for Renal Disease
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Electrocardiogram Screening
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Screening for hypertension
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Screening for Retinopathy
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Screening for risk of stroke using neuroimaging
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Screening for Pulmonary disease
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Reproductive counseling
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Contraception
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Clinical Preventive services
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Immunizations
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Vaso-Occlusive Crisis
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Fever
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Acute Renal Failure
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Priapism
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Hepatobiliary Complications
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Acute Anemia
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Splenic Sequestration
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Acute Chest Syndrome
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Acute Stroke
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Multisystem Organ Failure
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Acute Ocular Conditions
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Chronic pain
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Avascular Necrosis
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Leg Ulcers
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Pulmonary Hypertension
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Renal Complications
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Stuttering/Recurrent Priapism
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Ophthalmologic Complications
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Summary of the Evidence
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Hydroxurea Treatment Recommendations
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Consensus Treatment Protocol and Technical remarks for the implementation of Hydroxyurea Therapy
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Indications for transfusions
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Recommendations for Acute and Chronic Transfusion Therapy
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Appropriate Management/ Monitoring
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Consensus Protocol for Monitoring Individuals on Chronic Transfusion Therapy
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Complications of Transfusions
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Recommendations for the Management and Prevention of Transfusion Complications
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New Research is Needed
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Data Systems That Meet the Highest Standards of Scientific Rigor Can Be Invaluable
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Improved Phenotyping is needed
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Broad collaborations for Research and Care
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Beyond Efficacy
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Look, Listen, Empathize and Ask
Participants 164
The panel believed that, for this guideline document to be most helpful to primary care providers and specialty health care professionals, it needed to be comprehensive. This required that, in areas with minimal existing direct evidence, the panel would provide recommendations based on their and others expert opinions. Those recommendations are labeled as “consensus.” Several different situations, outlined below, led to the use of consensus statements.
Consensus-Panel Expertise
• Systematic reviews conducted by the methodology team revealed minimal or no supporting evidence (e.g., management of acute hepatic sequestration).
• An adequate systematic review of the literature was not feasible because of anticipated low yield or no yield (e.g., comparative effectiveness of management approaches for individuals with SCD presenting with fever or worsening anemia).
• Recommendations were based on the panel’s expert knowledge, practice experience, and ability to extrapolate evidence from non-SCD populations (e.g., management of chronic opioid therapy in chronic SCD pain).
Consensus-Adapted
These recommendations were based on the panel’s expert knowledge to adapt recommendations derived from existing guidelines and synthesized evidence developed by other professional societies (e.g., management of acute and chronic pain in SCD).
The panel clearly identified these statements as consensus recommendations and acknowledges that these areas represent gaps in the evidence base and areas for future research.
Prior to publication, these guidelines were reviewed by the NHLBI Advisory Council, a separate panel of SCD experts, and the National Blood Disorders Program Coordinating Committee. The guidelines were also posted to the NHLBI Web site for an extensive public review and comment period, which resulted in the submission of more than 1,300 comments from individuals and professional societies. The expert panel and NHLBI staff reviewed each comment or recommendation, many of which resulted in a revision to the guidelines. The guidelines were then reviewed by SCD experts representing three professional societies.
Responses