National Coordinating and Evaluation Center
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Target Audience:  Adults and Teens Seeking Information about Sickle Cell Trait

 

“Genes and Your Pregnancy – Getting Testing for Sickle Cell Trait” is a tri-fold brochure produced by the Children’s Hospital of Pittsburgh as an educational resource for pregnant women considering testing for sickle cell trait. The brochure contains information about sickle cell disease and trait; carriers, inheritance and risk calculations; and basic genetics. It also includes a few simple diagrams. The brochure is written at a 7th grade reading level. Ordering Information

 

“Planning for Healthy Families: Getting Testing for Sickle Cell Trait” is a tri-fold brochure produced by the Children’s Hospital of Pittsburgh as an educational resource for patients considering testing for sickle cell trait. The brochure contains information on sickle cell disease; sickle cell trait; basic genetics; and medical issues surrounding SCT. It also contains a number of clear inheritance diagrams and positive family photographs. The brochure is written at a 7th grade reading level.  Ordering Information

 

“Fact sheet: sickle cell trait”, produced by the Pediatric Hematology Center of Memphis/ St. Jude’s Children’s Research Hospital provides brief facts about why is it important to know if you have sickle cell trait (SCT).  Includes risk figures for couples in which both have SCT and only 1 has SCT.  The fact sheet is written at a 9th grade reading level. Available in Spanish.  Ordering Information

 

“KYSS: Know your sickle status: Sickle cell trait counseling manual” is a 10-page booklet produced by St. Jude Children’s Research Hospital as an educational resource for teenagers age 14-19 at risk for sickle cell trait.  The booklet contains information about sickle cell trait, hemoglobin (normal, trait, and disease), inheritance, sickle cell disease.  The information in the booklet was written in a clear, easy to follow manner. The booklet contained effective illustrations and graphics to represent various concepts.  The booklet is written at an 8th grade reading level.  Ordering Information

 

Target Audience:  Adolescents or Adults with Sickle Cell Trait

“Is It In Your Genes? Understanding Sickle Cell Trait” is a tri-fold brochure produced by the Children’s Hospital of Pittsburgh as an educational resource for adolescents and adults with sickle cell trait. The brochure contains information on sickle cell disease; sickle cell trait; and basic genetics. Graphics are included to help explain inheritance.  The brochure is written at a 6th grade reading level.  Ordering Information

 

Your Future Babies: Can any of them have Sickle Cell Disease” is a double sided informational tool produced by the NCEC/ SCDAA as part of the Sickle Cell Trait Toolkit.  The card is intended to be used as an educational tool to help people understand their chances for having a child with sickle cell disease or trait based on carrier results.  The tool would be useful for people that have had testing and know their carrier status.  It uses an example of both parents being AS to determine chance of a child with disease, emphasizes that it is an independent chance (all can have trait, all can have disease, there can be a combination, etc).  Clients can fill the card out themselves with help from their sickle cell counselor or doctor and keep in handy or share with other family members. This can be ordered by contacting SCDAA. Ordering Information

 

“Advice at a Glance” is an informational bookmark produced by the NCEC/ SCDAA as part of the Sickle Cell Trait Toolkit.  Included are “5 Things to Know” about trait, genetics, difference between trait and disease, trait/disease is hereditary, possibility of having a child with disease.  Information is in bulleted points, contains information about genes, emphasizes there are usually no medical complications with trait, emphasizes importance of getting partner tested if you are a carrier, seems to be easy to understand and something that patients could easily keep handy.  This is written at a 6th grade reading level.  Ordering Information

 

“Sickle Cell Disease and Trait”, is a fact sheet produced by the Georgia Comprehensive Sickle Cell Center.  The fact sheet includes information about SCD and SCT in a question and answer format.  The fact sheet also includes information about different types of disease and trait (i.e. C trait, E trait, Barts, beta thalassemia, etc.) Although it is written at 7th grade level, the amount of information and formatting may make this less suitable for individuals with lower reading skills.  Ordering Information

 

Target Audience:  Parents of Child with Sickle Cell Trait

“Your New Baby has Sickle Cell Trait” is a booklet produced by the NCEC/ SCDAA as part of the Sickle Cell Trait Toolkit.  Topics included are genetics/inheritance, rare problems associated with trait, possibility of having a child with sickle cell disease.  Lists “5 things you should know” with additional info under each point.  The booklet is written at a 4th grade reading level. It is available for download by clicking here.  Or, you may wish to order copies from SCDAA. Ordering Information

 

Getting Tested for Genes that can Cause Sickle Cell Disease” is a booklet produced by the SCDAA.  Topics include why to get tested, how to get tested, and facts about sickle cell disease/trait.  The booklet includes names of tests and pronunciation so parents can specifically ask for the best tests available, overall a useful and clear booklet.  Written at a 6th grade reading level. It is available for download by clicking here. Or, you may wish to order copies from SCDAA. Ordering Information

 

“The Family Connection: Sickle Cell Trait” is a booklet produced by the Sickle Cell Education Subcommittee of the NY State Genetic Disease Program.  The booklet explains SCT and provides information about meaning of test results and reproductive risks.  Graphics supplement the explanations of inheritance.  The booklet is written at an 8th grade reading level.  Available on-line

 

Target Audience:  Children with Sickle Cell Trait

“I Have Sickle Cell Too” is a tri-fold brochure produced by the Children’s Hospital of Pittsburgh as an educational resource for children with sickle cell trait. The brochure contains information about sickle cell trait; sickle cell disease; and basic genetics. The brochure uses simple, clear graphics and simple language.  The brochure is written at a 4th grade reading level. Ordering Information

 

Target Audience:  Parents of Child with Sickle Cell Disease

 

“Sickle Cell Disease and Acute Chest Syndrome” is a tri-fold pamphlet produced by Brookdale University Hospital and Medical Center as an educational resource for individuals or parents of children with sickle cell disease.  The pamphlet contains overview of acute chest syndrome (ACS), symptoms of ACS, tests to monitor ACS, cause of ACS in SCD, severity of ACS, treatment for ACS, transfusions, prevention of ACS, facts about SCD.  The pamphlet was written at a 6th grade reading level. Ordering Information

 

“Sickle Cell Trait” is a tri-fold pamphlet produced by Brookdale University Hospital and Medical Center as an educational resource for individuals or parents of children with sickle cell disease.  The pamphlet contains information about sickle cell trait, genes, sickle cell gene, red blood cells, testing for trait or disease, the importance of knowing trait status, and facts about SCD.  The pamphlet is written at a 6th grade reading level in a Q & A format that is both approachable and understandable.  Graphics are minimal and purposeful. Ordering Information

 

 “Your Child and Sickle Cell Disease” is an 18 page booklet written by Sara Day, RN of the Pediatric Hematology Center of Memphis/ St. Jude’s Children’s Research Hospital.  The booklet was revised in 2006.  The booklet, which includes a glossary, provides information about sickle cell disease and associated medical complications.  The booklet includes relevant and helpful illustrations, provides clear explanations and instructions and includes guidelines for keeping your child as healthy as possible.  A notes page in the back of the book is provided for parents to write questions that come up when reading the book to ask the physician.  The booklet is written at an 8th grade reading level with a helpful glossary for unfamiliar terms.  Ordering Information

 

“Hope and Destiny: A patient’s and parent’s guide to SCD and SCT” is a 15-page booklet written by Alan F. Platt, Jr., PA-C, Alan Sacerdote, MD.  The booklet includes a description of sickle cell disease and sickle cell trait and answers the following questions:  What is SCD?  Are there different types of SCD?  How do you get SCD?  Is SCD only found in African American?  How did SCD come to be?  What is SCT?  Can SCT cause symptoms?  How can I be tested?  Should I have my newborn tested?  What are the complications of SCD?  What can you do to prevent these complications?  What are the signs of a SCD emergency?  How can I manage my pain?  How long will I live?  What should I tell my child’s teachers?   The booklet also includes resources and messages of hope for patients and parents.  The reading level is high (college) making this less suitable for clients with lower literacy skills.  Ordering information

 

 “Sickle cell disease and Your Child” is a 31-page book written by Donna Barnes et al. of Howard University Center for Sickle Cell Disease and Department of Pediatrics and Child Health in 2002.  Topics include: What is SCD?  Inheritance, Blood and hemoglobin, How does SCD affect the body?  (covers all complications thoroughly), Treatments, Care of Children with SCD, Hope for the future, About Howard University and its institutions.  The format includes photographs on each page. The “Care of children with SCD” section has a list of things NOT to do, and a list of things TO do.  The book is written at a 10th grade reading level.  Ordering Information

 

“Nutrition for the Child with SC” is a 31-page book written in 1996 by Ruth Williams, MS, RD, & Winfred Wang, MD and published by the Pediatric Hematology Center of Memphis/ St. Jude’s Children’s Research Hospital.  The book includes information for children about nutrition and food choices.  It also contains guidelines for what parents can do to help their child eat well.  This is an interactive book for patients to write and draw in, and includes many activities (examples: what can you eat from the bread group for breakfast? Name three ways to cook a potato).  A page for patients to plan a meal using the food pyramid is also included.  Information is presented in numbered lists so it is easier to read.  The book is written at a 4th grade reading level and includes helpful illustrations.  Ordering Information

 

 “Fact Sheet: Penicillin” written by Sara Day, R.N. and Rhonda Dancy, R.N. of the Pediatric Hematology Center of Memphis/ St. Jude’s Children’s Research Hospital provides uses a question and answer format to provide information on the following topics: Why penicillin is important; How often to give penicillin; Different forms of penicillin; and Where to store penicillin.  The key information is provided in bulleted points and direct statement “give penicillin 2 times a day every day”.  The fact sheet is written at an 8th grade reading level.  Ordering Information

 

 “Chronic Red Blood Cell Transfusion for Sickle Cell Disease” is a brochure published by the Pediatric Hematology Center of Memphis/ St. Jude’s Children’s Research Hospital that uses a question and answer format to provide education about red blood cell transfusion for patients with SCD.  The following questions are answered: Why is RBC transfusion given to sickle cell patients?  When is it necessary?  How is it given?  How often?  What are the risks?  What are the benefits?  Is chronic transfusion the only treatment?  With whom can I talk about RBC transfusion?  Paragraphs are brief and include all relevant information while maintaining brevity.  Reading level is too high (12th grade) for some patients and families, but reads nicely for medical professionals. Ordering Information

 

“Fact Sheet: Aplastic Crisis” is a fact sheet  written by Lynn Wynn, R.N., & Sara Day, R.N and published by the Pediatric Hematology Center of Memphis/ St. Jude’s Children’s Research Hospital.  A question and answer format provides answers to the following questions: What is an aplastic crisis?  What causes it?  How does a child with aplastic crisis look?  How does the doctor find out if the child has an aplastic crisis?  How is it treated?  How long does it last?  Does the child’s family need to be careful?  Can a child have many aplastic crises?  Each question is followed by a list of bulleted points to answer the questions in a few sentences.  The fact sheet is written at a 7th grade reading level.  Ordering Information

 

 “Fact Sheet: Strokes in Children with SCD” is a double-sided fact sheet written by Sylvia C Harris, RN of the Pediatric Hematology Center of Memphis/ St. Jude’s Children’s Research Hospital in 2005.  The document uses a question and answer format to address the following topics: What is a stroke?  What are the symptoms of a stroke?  What should I do if I think my child is having a stroke or has had a stroke?  How can the doctor tell whether my child has had a stroke?  What is the treatment for a stroke?  Is the brain damage caused by a stroke permanent?  Is there a way to find out if my child is at risk of a stroke before it happens?  What is the long-term treatment for stroke?   The fact sheet is written at a 7th grade reading level and presents relevant information in brief paragraphs of only a few sentences.  Ordering Information

 

 Bone Marrow/Stem Cell Transplantation for Sickle Cell Disease” is a brochure published by the Pediatric Hematology Center of Memphis/ St. Jude’s Children’s Research Hospital that uses a question and answer format to provide education about bone marrow transplantation for children with SCD.  The following questions are answered:  How does bone marrow/stem cell transplantation work?  Who can donate?  What are the complications?  What is required for a transplant?  Is bone marrow/stem cell transplantation the only treatment?  With whom can I talk to?  Written at a 12th grade reading level, the brochure may not be appropriate for people with lower literacy.  Ordering Information

 

 “Bone Marrow Transplantation for Sickle Cell Disease” is a tri-fold pamphlet produced by Brookdale University Hospital and Medical Center as an educational resource for individuals or parents of children with sickle cell disease.  The pamphlet contains information about stem cells, bone marrow transplant, need for BMT in SCD, how the procedure is done, finding a donor, complications, which patients with SCD should get a BMT, and facts about SCD.  The layout of this pamphlet is very good. The pamphlet is written at a 6th grade reading level.  Ordering Information

 

“Hydroxyurea treatment for Sickle Cell Disease” is a brochure published by the Pediatric Hematology Center of Memphis/ St. Jude’s Children’s Research Hospital.  The brochure uses a question and answer format to provide information on the following topics: Who should take hydroxyurea?  How does hydroxyurea work?  Is it a cure?  What tests are done to monitor hydroxyurea treatment?  Is it the only treatment?  With whom can I talk about hydroxyurea?  Written at a 12th grade reading level, brochure may be more appropriate for a medical professional to read about hydroxyurea than for most patients. 
Ordering Information

 

“Sickle Cell Disease Related Pain. A Guide for Patients and Parents” is a 20-page booklet published by the New England Regional Genetics Group in 1994.  The booklet is organized into five parts. Part one discusses what a pain episode is, conditions associated with pain episodes, types of pain that may not be associated with sickle cell, and describing and measuring pain.  Part two deals with treating the pain including what types of medication to use, tolerance and addiction, side effects, home remedies, and tips about medications.  Part three discusses how to manage the pain at home, when to go to the doctors or hospital and ways to relieve pain without medicine.  Part four discusses how to work with your health care team including choosing a doctor, advocating for yourself and your child, and navigating the health care system.  Part Five includes additional resources.  Written at a 10th grade level, this booklet might be less useful for patients with lower literacy.  Nonetheless this is a good resource for individuals with sickle cell disease and their families as it contains comprehensive information about pain episodes and how to treat them written in a clear, accurate and sensitive manner.  Ordering Information

 

Genetic Counseling Pre-/Post-Test” is a ten question multiple-choice quiz designed by the Memorial Sickle Cell Day Hospital at Memorial Regional Hospital in Hollywood, Florida to evaluate clients’ understanding of sickle cell disease prior to, and following, genetic counseling about SCD. This quiz covers basic sickle cell disease biology and inheritance, using both multiple-choice and true/false responses. The same quiz is given both before and after genetic counseling, and results can be compared to assess effectiveness of the educational component of the genetic counseling session. This quiz is written at a 7th grade reading level. Ordering Information

 

Target Audience:  Teenagers with Sickle Cell Disease

“Taking Control: teenagers living with SCD” is a 47 page book written in 1994 by Sara Day, RN, Cathy Dufour, MSW and published by the Pediatric Hematology Center of Memphis/ St. Jude’s Children’s Research Hospital.  The book uses language to “connect” with the teenager, more conversational.  Separated into different units with activities, readers should cover one unit at a time, provides room for questions and notes to be written.  Although the book is long and contains a lot of information, the pages are not text heavy and the units are broken up into manageable sections.  The book is written at a 7th grade reading level and contains some useful graphics and illustrations.  Ordering Information

 

Target Audience:  People with Sickle Cell Disease

“Sickle Cell Disease Related Pain. A Guide for Patients and Parents” is a 20-page booklet published by the New England Regional Genetics Group in 1994.  The booklet is organized into five parts. Part one discusses what a pain episode is, conditions associated with pain episodes, types of pain that may not be associated with sickle cell, and describing and measuring pain.  Part two deals with treating the pain including what types of medication to use, tolerance and addiction, side effects, home remedies, and tips about medications.  Part three discusses how to manage the pain at home, when to go to the doctors or hospital and ways to relieve pain without medicine.  Part four discusses how to work with your health care team including choosing a doctor, advocating for yourself and your child, and navigating the health care system.  Part Five includes additional resources.  Written at a 10th grade level, this booklet might be less useful for patients with lower literacy.  Nonetheless this is a good resource for individuals with sickle cell disease and their families as it contains comprehensive information about pain episodes and how to treat them written in a clear, accurate and sensitive manner.  Ordering Information

 

 “Sickle Cell Disease” is a tri-fold brochure produced by the Children’s Hospital of Pittsburgh as an educational resource for patients and families with sickle cell disease. The brochure contains information about hemoglobin; sickle cell disease; health problems associated with SCD; management of SCD; sickle cell trait; and patterns of inheritance. Information about hemoglobin, sickle cell trait, sickle cell disease, and health management is effectively presented, with clear graphics and easy to follow text. The brochure is written at a 10th grade reading level. Ordering Information

 

“Hemoglobin S Trait” is a tri-fold brochure produced by the Children’s Hospital of Pittsburgh as an educational resource for patients and families with hemoglobin S trait. The brochure contains information about hemoglobin; hemoglobin S trait; sickle cell disease; and patterns of inheritance. This brochure provides the most basic information about these topics, and simple diagrams help to explain inheritance. As a result, this brochure would be a good starting point for patients learning about hemoglobin S trait. The brochure is written at an 8th grade reading level. Ordering Information

 

 Genetic Counseling Pre-/Post-Test” is a ten question multiple-choice quiz designed by the Memorial Sickle Cell Day Hospital at Memorial Regional Hospital in Hollywood, Florida to evaluate clients’ understanding of sickle cell disease prior to, and following, genetic counseling about SCD. This quiz covers basic sickle cell disease biology and inheritance, using both multiple-choice and true/false responses. The same quiz is given both before and after genetic counseling, and results can be compared to assess effectiveness of the educational component of the genetic counseling session. This quiz is written at a 7th grade reading level. Ordering Information

 

Target Audience:  People with Beta Thalassemia Trait

“Beta Thalassemia Trait” is a tri-fold brochure produced by the Children’s Hospital of Pittsburgh for patients with beta thalassemia trait. The brochure contains information about hemoglobin; thalassemias; patterns of inheritance; and risk calculation. It also includes a number of diagrams which help to explain patterns of inheritance and risk calculations in a variety of sample families. This brochure is written at a 12th grade reading level. Ordering Information

 

Target Audience:  People with Hemoglobin C Trait

“Hemoglobin C Trait” is a tri-fold brochure produced by the Children’s Hospital of Pittsburgh as an educational resource for parents of children with hemoglobin C trait or individuals with hemoglobin C trait. The brochure contains information about hemoglobin; hemoglobin C trait and disease; hemoglobin s/c disease; and patterns of inheritance. The brochure is written at an 8th grade reading level.  Few diagrams, technical terms, and long sentences may make this brochure inaccessible to some readers.  Ordering Information

 

Target Audience:  People with Alpha-Thalassemia Trait

“Alpha Thalassemia Trait” is a tri-fold brochure produced by the Children’s Hospital of Pittsburgh as an educational resource for patients and families dealing with alpha thalassemia trait and possibly hemoglobin H disease or hydrops fetalis.  The brochure contains information about hemoglobin and thalassemias; alpha thalassemia trait; hemoglobin H disease; hydrops fetalis; and patterns of inheritance.  The brochure is written at a 10th grade reading level. Although graphics are provided to help explain inheritance patterns of thalassemias, this section of the brochure remains complex. Ordering Information

 

Target Audience:  People with Hemoglobin D Trait

“Hemoglobin D Trait” is a tri-fold brochure produced by the Children’s Hospital of Pittsburgh as an educational resource for patients and families with hemoglobin D trait. The brochure contains information about hemoglobin; hemoglobin D trait and disease; sickle-hemoglobin D disease; and patterns of inheritance. This brochure contains a lot of important information, but uses dense text and few diagrams. It might be most appropriate for patients after they have seen the doctor and learnt about hemoglobin D trait, as a reminder of the information already provided.  The brochure is written at a 10th grade reading level. Ordering Information

 

Target Audience:  People with Hemoglobin E Trait

“Hemoglobin E Trait” is a tri-fold brochure produced by the Children’s Hospital of Pittsburgh as an educational resource for parents of children with hemoglobin E trait or individuals with hemoglobin E trait. The brochure contains information about hemoglobin; hemoglobin E trait and disease; E/beta thalassemia; and patterns of inheritance. The brochure is written at a 9th grade reading level. Few diagrams, technical terms, and long sentences may make this brochure inaccessible to some readers. Ordering Information

 

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