TAILIEUCHUNG - The Center for Children with Special Needs Seattle Children’s Hospital, Seattle, WA

Only two studies investigated barriers to use of HU. Perceived efficacy and perceived safety of HU had the largest influence on patients' (or parents' ) choice to use HU. Providers reported barriers to be patient concerns about side effects; and their own concerns about HU in older patients, patient compliance, lack of contraception, side effects and carcinogenic potential, doubts about effectiveness, and concern about costs. Conclusions. HU is efficacious in children and adults with SCD; with an increase in Hb F%, and reduction in hospitalizations and pain crises. However, few studies have measured the effectiveness of HU for. | Sickle Cell Disease CRITICAL ELEMENTS OF CARE Produced by The Center for Children with Special Needs Seattle Children s Hospital Seattle WA Fifth Edition Revised 1 2012 The Critical Elements of Care CEC considers care issues across the life span of the child. The intent of the document is to educate and support those caring for a child with sickle cell disease. The CEC is intended as a general aid to health care providers to assist in the recognition of symptoms diagnosis and care management related to a specific diagnosis. The document provides a framework for a consistent approach to management of these children. These guidelines were developed through a consensus process. The design team was multidisciplinary with statewide representation involving primary and tertiary care providers family members and a representative from a Health Plan. Content reviewed and updated 1 2012 M. A. Bender MD PhD Gabrielle Seibel MN MPH ARNP This document is also available on the Center for Children with Special Needs website at . DISCLAIMER Individual variations in the condition of the patient status of patient and family and the response to treatment as well as other circumstances mean that the optimal treatment outcome for some patients may be obtained from practices other than those recommended in this document. This consensus-based document is not intended to replace sound clinical judgment or individualized consultation with the responsible provider regarding patient care needs. . age 6 describing her sickle cell pain TABLE OF CONTENTS Sickle Cell Disease CRITICAL ELEMENTS OF CARE I. OVERVIEW OF SICKLE CELL DISEASE Definition of Sickle Cell Psychosocial Aspects of Sickle Cell II. BASIC TENETS OF HEMOGLOBINOPATHY FOLLOW-UP Hemoglobinopathy Follow-Up Diagnostic Testing for the Common Sickle Cell III. GUIDELINES FOR CARE OF CHILDREN WITH SICKLE CELL Definition of Levels of Clinic Age-Specific Care

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