September 2006

General Resources

Introduction

This knowledge path has been compiled by the Maternal and Child Health Library at Georgetown University. It offers a selection of current, high-quality resources about diabetes in children and adolescents, including resources about the types of diabetes, its prevalence, treatment and care, and lowering the risk of complications. The knowledge path also identifies tools for staying abreast of new developments in pediatric diabetes research. It is aimed at health professionals, program administrators, educators, and researchers. A separate section identifies resources for families. This knowledge path will be updated regularly.

Related knowledge paths: Children and adolescents with special health care needs, Child and adolescent nutrition, Overweight and obesity in children and adolescents, and Physical activity and children and adolescents.

Overview

• See Overview of diabetes in children and adolescents. (2006). This guide from the National Diabetes Education Program describes the types of diabetes; the prevalence, diagnosis, treatment, and management of diabetes in children and adolescents; monitoring complications; visiting the health care team; family support; and prevention strategies for type 2 diabetes.
  

  
  

Web Sites: A-Z

• American Association of Diabetes Educators (AADE). Contains information about diabetes for health professionals that includes education opportunities, awareness campaigns, research, position statements, and contact information for diabetes educators around the country. Recent resources include

  Art and science of diabetes self-management education: A desk reference for healthcare professionals. (2006). Description and ordering information.

  Family perspective: Type 2 diabetes in young people (2005), Managing type 2 diabetes in young people. (2005), and Moving forward: Type 2 diabetes in young people. (2005). Description and ordering information for these consumer-education videotapes.

• American Diabetes Association (ADA). Provides a wide range of resources about diabetes risk factors, diagnosis, management, and complications. Offers resources for families, a companion Spanish-language Web site, and information specific to several racial and ethnic communities. Resources for health professionals include clinical practice guidelines, standards of care, and full-text journal articles; consumer-education tools; a research database; conference and continuing-education information; and an electronic newsletter. A selection of recent resources include

  All About Diabetes. This Web resource describes the major types of diabetes, how diabetes is diagnosed, its prevalence in the United States, and links to a wide range of resources for further information.

  Annual review of diabetes. (2006). Description and ordering information.

  Clinical practice recommendations. (2006). This online compilation includes position statements such as Diabetes care in the school and day care setting (2006), Diabetes care at diabetes camps (2006), and Children and adolescents with type 1 diabetes (2005), a clinical review with recommendations.

• Centers for Disease Control and Prevention (CDC). Offers resources and initiatives about diabetes in children and adolescents that include

  Division of Diabetes Translation: Diabetes Public Health Resource. Contains a wealth of information for health professionals aimed at translating diabetes research into daily practice to understand the impact of the disease, influence health outcomes, and improve access to quality health care. Offers conference and program information, including information about state-based diabetes prevention and control programs and information about diabetes projects that focus on specific geographic areas or populations such as child and adolescent diabetes projects. Also provides data, Spanish-language resources, and diabetes-related news. Recent publications include

  • Diabetes: Disabling, deadly, and on the rise. At a glance. (2006).
    
    
  • National diabetes fact sheet: General information and national estimates on diabetes in the United States. (2005).

  Guide to Community Preventive Services: Diabetes. Contains recommendations for selected population-based interventions addressing diabetes that focus on health-care-system interventions and diabetes self-management.

• Healthy People 2010. Offers information about this national health-promotion and disease-prevention initiative created by a broad coalition of experts from many sectors to improve the health of all Americans, eliminate disparities in health, and improve years and quality of healthy life. The initiative addresses 467 objectives in 28 focus areas. Focus area 5 addresses diabetes. Healthy People 2010 contains background information on the initiative; the complete text (online and searchable), Healthy People 2010: Understanding and improving health, 2nd ed. (2000); data; a list of the Healthy People partners and related sites; and other Healthy People publications. It is coordinated by the Office of Disease Prevention and Health Promotion (ODPHP).
  
  
• Indian Health Service (IHS): Division of Diabetes Treatment and Prevention. Provides program, grants, and training information and resources about preventing and controlling diabetes in American Indian and Alaska Native peoples. Offers a program directory and a set of best practice approaches for program planning in various areas of diabetes care and prevention that include a model of care for children and adolescents and another for school health.
  
  
• Joslin Diabetes Center. Provides a wealth of information about diabetes treatment, research, and education for researchers, health professionals, and families. Professional resources include clinical practice guidelines, clinical research news and tools, and information about Joslin's programs and services, including online professional education opportunities. Joslin is affiliated with Harvard Medical School.
  
  
• Juvenile Diabetes Research Foundation (JDRF). Contains information for researchers and families about all aspects of type 1 diabetes. Includes abstracts of JDRF-funded research; grant information and applications; information about new treatments, clinical trials, and JDRF-funded research centers and initiatives; and a research newsletter. JDRF aims to find a cure for diabetes and its complications through the support of research.
  
  
• National Diabetes Education Program (NDEP). Contains a wealth of resources for health professionals, school personnel, employers, and families about diabetes prevention and control. Offers information and tools for conducting community-awareness campaigns and resources focused on particular audiences, including children and adolescents with diabetes, African Americans, Latinos, American Indians, and Asian Americans and Pacific Islanders. NDEP is a joint effort between the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH). Current publications and initiatives include an electronic newsletter and

  Making Systems Changes for Better Diabetes Care. Provides models and tools to help health professionals improve diabetes prevention and treatment.

  Overview of diabetes in children and adolescents. (2006).

• National Eye Institute (NEI). Offers several publications for families and health professionals about diabetic eye disease and its treatment.
  
  
• National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK). Provides information about biomedical research and training; clinical research; funding opportunities; scientific conferences and workshops; reports, testimony, strategic plans; and health-education materials about diabetes. Includes information about and links to the Diabetes and Endocrinology Research Centers and the Diabetes Research and Training Centers that NIDDK funds around the country. NIDDK is part of the National Institutes of Health (NIH). Consumer information about diabetes is disseminated via NIDDK's National Diabetes Information Clearinghouse (NDIC).
  
  
• Office of Minority Health Resource Center (OMHRC): Diabetes. Includes a fact sheet and links to news, statistics, and publications about diabetes among American Indians and Alaska Natives, Asian Americans, African Americans, Latinos, Native Hawaiians, and other Pacific Islanders.
  
  
• SEARCH for Diabetes in Youth. Describes this multi-center study focusing on children and adolescents with diabetes in the United States. Includes contact information for the six clinical centers participating in the study. SEARCH is funded by the Centers for Disease Control and Prevention (CDC) and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).
  
  
• Steps to a HealthierUS Initiative. Contains conference proceedings, reports, fact sheets, data, and grant information for this national initiative by the Department of Health and Human Services (DHHS) to improve the lives of Americans through innovative and effective community-based chronic-disease-prevention and -control programs to reduce the burden of chronic diseases. Publications about diabetes include

  Preventing chronic diseases: Investing wisely in health. Preventing diabetes and its complications. (2003).

  Diabetes: A national action plan. (2004).

  
  

Additional Electronic Publications

• Coffey RM, Matthews TL, McDermott K. 2004. Diabetes care quality improvement: A resource guide for state action. Rockville, MD: Agency for Healthcare Research and Quality. This guide and its companion workbook, Diabetes care quality improvement: A workbook for state action, are designed to help states assess the quality of diabetes care and develop quality-improvement strategies.
  
  
• National Asian Women's Health Organization (NAWHO). 2005. Asian American attitudes toward diabetes among children. San Francisco, CA: National Asian Women's Health Organization. This report provides the findings of NAWHO's questionnaire on adult attitudes toward the growing problem of obesity and type II diabetes among American children.
  

  
  

Additional Print Publications

• Chiarelli F, Dahl-Jørgensen K, Kiess W, eds. 2005. Diabetes in childhood and adolescence. New York, NY: Karger. Description and ordering information.
  
  
• Daneman D, Hamilton J, eds. 2005. Insulin resistance in children and adolescents. Hauppauge, NY: Nova Science Publishers. Description and ordering information.
  
  
• Evert AB, Hess-Fischl A, eds. 2006. Pediatric diabetes: Health care reference and client education handouts. Chicago, IL.: American Dietetic Association. Description and ordering information.
  
  
• Ford AM. 2005. Focus on diabetes mellitus research. Hauppauge, NY: Nova Science Publishers. Description and ordering information.
  
  
• Mertig RG. 2006. The nurse's guide to teaching diabetes self-management: What nurses need to know. New York, NY: Springer Publishing. Description and ordering information.
  
  
• Raine JE, Donaldson M, Gregory J, Savage M, Hintz R. 2006. Practical endocrinology and diabetes in children, 2nd ed. Malden, MA: Blackwell Publishing. Description and ordering information.
  

  
  

Databases

The databases listed below are excellent tools for identifying data, additional literature and research, and programs about diabetes in children and adolescents. Many of the entries below contain tips on how to use the databases efficiently. Please note that databases vary in how terms should be entered; for example, some require quotation marks and others don't. Enter search phrases as shown in bold below.

Data

• Data2010: The Healthy People 2010 Database. Contains the most recent monitoring data for tracking Healthy People 2010. To obtain national data about diabetes, click on the field, Data by Focus Area. Under the field, Select a Focus Area, choose 05 - Diabetes from the pop-up menu. Next, click on the button for Include Related Objectives From Other Focus Areas in the Table. Click on the Submit button. This data set is provided by the National Center for Health Statistics (NCHS) via CDC Wonder.
  
  
• Diabetes Surveillance System. Collects, analyzes, and disseminates data on diabetes and its complications. Please note that most of the data reflects diabetes in the adult population. This system is a service of the Centers for Disease Control and Prevention (CDC).
  
  
• Kids' Inpatient Database (KID). Contains data from 2 to 3 million hospital discharges of children and adolescents in the United States that researchers, policymakers, and others can use to identify, track, and analyze national trends in children's health care utilization, access, charges, quality, and outcomes. KID may be purchased for $200 for each year produced. KID is sponsored by the Agency for Healthcare Research and Quality (AHRQ). A recent KID analysis is

  Economic and health costs of diabetes: HCUP highlight 1. (2005).

• National Nutrient Database for Standard Reference. Lists the nutrients for more than 7,000 food items. Each item can be found in any one of 23 food-group categories. A portion-modifier option is also included. Visitors to the Web site can search and view the data online or download the data files and documentation in several different formats for use later on their computers. The database is a service of the Nutrient Data Laboratory (NDL) at USDA's Agricultural Research Service (ARS).
  
  
• National Quality Measures Clearinghouse™ (NQMC). Contains evidence-based health-care-quality measures and measure sets for physicians, hospitals, and health plans to evaluate and improve the quality of health care for consumers. Identify measures about diabetes in children and adolescents by entering diabetes in the Disease/Condition field of the detailed search form. Scroll down on the search form to select Age Range (e.g., Adolescent, Child, Infant). Hold down the control key (ctrl) or Apple command key and click your mouse to make multiple selections. The database is sponsored by the Agency for Healthcare Research and Quality (AHRQ).
  

Literature and Research Databases

• AGRICOLA (AGRICultural OnLine Access). Contains bibliographic information for agricultural literature including many child and adolescent nutrition publications. AGRICOLA is organized into two data sets (books and journal articles). To identify books or articles on the topic, click on Keyword Search. Enter the term, diabetes. In the next row, enter children adolescents and select "any of these" and "Keyword Anywhere" in the two fields to the right. Click on Search. AGRICOLA is a service of the National Agricultural Library (NAL).
  
  
• American Diabetes Association (ADA) Research Database. Offers information about ADA-funded research grants. Search by keyword, researcher, or the type of diabetes research being performed.
  
  
• ClinicalTrials.gov. Provides access to information about clinical research studies for a wide range of diseases and conditions, including diabetes. Included are a summary of the purpose of the study, recruiting status, criteria for patient participation, location of the trial, and contact information. To identify diabetes-related studies involving children and adolescents, enter the search phrase diabetes AND (children OR adolescents) and click on Search. ClinicalTrials.gov is a service of the National Library of Medicine (NLM).
  
  
• Computer Retrieval of Information on Scientific Projects (CRISP). Contains information about federally funded biomedical research projects conducted at universities, hospitals, and other research institutions. Search CRISP to identify scientific concepts, emerging trends and techniques, or specific projects or investigators. To identify projects about diabetes and children and adolescents, conduct two searches. Type diabetes child in the search term box of the Query Form and click on And in the Global Logic field. Click on Submit Query to get your results. Next, type diabetes adolescence in the search term box of the Query Form and click on And in the Global Logic field. Click on Submit Query to get your results. The database is maintained by the Office of Extramural Research at the National Institutes of Health.
  
  
• Database of Abstracts of Reviews of Effects (DARE). Contains summaries of systematic reviews that have met strict quality criteria. Included reviews have to be about the effects of interventions. Each summary also provides a critical commentary on the quality of the review. To identify reviews about diabetes and children and adolescents, enter the phrase, diabetes AND (children OR adolescents) in the search box. Click on Search to get your results. DARE is produced and maintained by the Centre for Reviews and Dissemination at the University of York.
  
  
• Educational Resources Information Center (ERIC) Database. Covers all aspects of education-related issues through journal articles, research reports, teaching guides, curricula, conference papers, and books. Search the database to identify many items about diabetes and children and adolescents. Select Advanced Search. Under Search for, select Descriptors (from Thesaurus), and enter the term, diabetes in the next field. In the next row, select NOT; select Descriptors (from Thesaurus); and enter the term, adults. Scroll down on the search form to select publication date and/or publication type. ERIC is the information database of the Department of Education (ED).
  
  
• Maternal and Child Health Library at the National Center for Education in Maternal and Child Health (NCEMCH), Georgetown University. Maintains several databases to collect, manage, and disseminate knowledge about maternal and child health (MCH), with special emphasis on knowledge gained from initiatives and programs supported by the Maternal and Child Health Bureau (MCHB). The library's bibliographic database is

  MCHLine®. Comprises an online catalog of materials in the Maternal and Child Health Library. To identify items about diabetes in children and adolescents, conduct two searches in the keyword field of the database search form using the terms diabetes child and diabetes adolescen. There will be overlap in the records identified in these searches.

  Also see the MCH Organizations Database.

• National Guideline Clearinghouse (NGC). Contains evidence-based clinical practice guidelines and related materials for health professionals. Identify guidelines about diabetes in children and adolescents by entering diabetes in the Disease/Condition field of the detailed search form. Scroll down on the search form to select Age of Target Population (e.g., Adolescent, Child, Infant). Hold down the control key (ctrl) or Apple command key and click your mouse to make multiple selections. The database is an initiative of the Agency for Healthcare Research and Quality (AHRQ).
  
  
• NIDDK Reference Collection. Maintains a database of health-education materials for consumers and health professionals. To identify materials about diabetes in children and adolescents, select advanced search. Enter children OR adolescents in the Search for field and select Diabetes (DM) in the databases field. Select Publication Date, Format, or Language to narrow your search. Click on Search. This database is a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK).
  
  
• PubMed. Contains over 17 million citations for biomedical articles that date back to the 1950s. These citations are from MEDLINE and additional life sciences journals. PubMed includes links to many sites providing full-text articles and other related resources. To identify citations on the topic, enter the search term diabetes. Then, click on Limits and make the following selections on the page: select a date (e.g. Published in the last 2 years); click on Humans; click on Languages: English; click on Ages: All Child; and select Tag Terms: MeSH Major Topic. Select a type of article or add search terms to further limit the search (e.g., diabetes AND patient education, diabetes AND nutrition). PubMed is a service of the National Library of Medicine (NLM).
  

Programs Databases

• Bureau of Primary Health Care (BPHC) Service Delivery Sites. Offers contact information for community health centers that provide free or low-cost care to underserved populations. The database is searchable by geographic area, clinic name, and type of service provided.
  
  
• MCH Organizations Database. Lists over 2,000 government, professional, and voluntary organizations involved in MCH activities, primarily at a national level. Find organizations focusing on the topic by entering the term diabetes in the keyword field of the database search form.
  
  
• Also see CDC's Division of Diabetes Translation for state-based diabetes prevention and control programs and information about diabetes projects that focus on specific geographic areas or populations. See too the IHS Division of Diabetes Treatment and Prevention program directory.
  

  
  

Electronic Newsletters and Online Discussion Groups

• Diabetes e-news now! Health care professional edition. This weekly electronic newsletter by the American Diabetes Association (ADA) reports on diabetes news and events.
  
  
• NDEP news & notes. This monthly electronic newsletter offers information about new products and activities from the National Diabetes Education Program (NDEP).
  
  
• Research frontline. This electronic newsletter is published by the Juvenile Diabetes Research Foundation (JDRF) every 6 to 8 weeks to provide the latest information about research on type 1 diabetes and its complications.
  

  
  

Resources for Families

Web Sites for Families: A-Z

• American Diabetes Association: Diabetes Information for Parents and Kids. Presents a wealth of information about raising a child with diabetes that includes diabetes diagnosis, care, and complications; challenges when a child is at school or otherwise away from home; parenting and family life; nutrition and meal planning; physical activity; diabetes camps; and legal rights. Offers a series of Print-On-Demand (POD) pieces about specific aspects of diabetes care such as insulin pumps and recordkeeping. Also offers a series of research summaries about diabetes in children and adolescents; electronic newsletters and message boards; contact information for the ADA Family Resource Network; the Youth Zone, an interactive education section for children with diabetes; and the educational section, For Teens. ADA also has an online bookstore with a large collection of books for parents, children, and adolescents. Recent publications include

  101 tips for raising healthy kids with diabetes. (2006). Description and ordering information.

  Reproductive health awareness for teenage women with diabetes: What teens want to know about sexuality, pregnancy, and diabetes. (2006). Description and ordering information.

• Children with DIABETES (CWD). Offers information for parents, children, and adolescents about all aspects of diabetes care. Includes articles from parents and stories by children and adolescents with diabetes; an opportunity to pose questions and read answers by a team of diabetes specialists; basic medical information about diabetes, insulin, and research; the Family Support Network for contacting other families affected by diabetes; a list of camps for children with diabetes; descriptions and reviews of various diabetes products; and online communication opportunities.
  
  
• Diabetes Education and Camping Association (DECA). Presents a directory of diabetes camps in the United States and internationally. DECA members are camping and youth leaders and medical professionals who operate diabetes camps and programs for children and adolescents with diabetes.
  
  
• Food and Drug Administration (FDA): Diabetes Information. Contains information for people with diabetes and parents of children and adolescents with diabetes about medical products and strategies to treat the disease, including glucose meters, insulin, diabetes pills, lancing devices and disposal, meal planning, and complications of diabetes. Also provides news about diabetes findings, product approvals, upcoming panel meetings, and diabetes care.
  
  
• GrandmaSandy.com. Offers books and games for children about type 1 diabetes. Several books and games have been translated into other languages. GrandmaSandy is the grandmother of a child with diabetes.
  
  
• Joslin Diabetes Center: Learn About Diabetes. Offers resources for families that include an online guide to general information about diabetes; a glossary of diabetes words and phrases; information on specific topics such as monitoring, insulin, oral medications, nutrition, exercise, foot care, coping, complications, and protecting children and adolescents from type 2 diabetes; online classes about diabetes care; and online discussion groups and an electronic newsletter . Also provides contact information for Joslin treatment and education services that include its JumpStart Program for children newly diagnosed with diabetes. Publications include books about managing diabetes, cookbooks, and books by and for children and adolescents with diabetes. A recent publication is

  Joslin guide to diabetes, rev. ed. (2005). Description and ordering information.

• Juvenile Diabetes Research Foundation (JDRF). Contains information for families about all aspects of type 1 diabetes. Publications include magazines, electronic newsletters, books written for and by children and adolescents about growing up with diabetes, parenting guides, and cookbooks. JDRF's Kids Online delivers information and activities for children that include opportunities to connect with pen pals who also have diabetes. Life with Diabetes for Teens posts articles about living with the challenges of diabetes.
  
  
• National Diabetes Education Program (NDEP): Resources on Children and Adolescents. Offers resources for families about diabetes prevention and control, including

  Dealing with the ups and downs of diabetes. (2005).

  Lower your risk for diabetes. (2005).

  Small Steps. Big Rewards. Prevent Type 2 Diabetes Campaign. Presents materials for people at risk for diabetes, including women with a history of gestational diabetes and their children.

  Tips for children with type 2 diabetes series, rev. ed. (2005). This series of colorful, reproducible tip sheets about managing diabetes for children and their families is also available in Spanish.

• National Diabetes Information Clearinghouse (NDIC). Offers consumer information about diabetes that includes a guide for newly diagnosed patients and resources about diabetes treatments and complications. Some resources are available in Spanish, and some are in an easy-to-read format. Also includes statistics, descriptions of clinical trials, and research reports about diabetes.
  
  
• Also see the National Eye Institute (NEI).
  

  
  

Additional Electronic Resources for Families

• Chase HP. 2006. Understanding diabetes, 11th ed. Denver, CO: Children's Diabetes Foundation at Denver. This handbook for people who are living with diabetes encompasses the clinical practices of the Barbara Davis Center for Childhood Diabetes. To purchase a print version of this book or a synopsis in English and Spanish, see the Children's Diabetes Foundation.
  
  
• Perez G. 2006. Eagle books: Stories about growing strong and preventing diabetes. Atlanta, GA: Centers for Disease Control and Prevention (CDC). See a description and ordering information for this series of four books for children.
  
  
• Also see the AADE consumer-education videotapes.
  

  
  

Additional Print Publications for Families

• Colberg S, Friesz M. 2005. Diabetes-free kids: A take-charge plan for preventing and treating type 2 diabetes in children. New York, NY: Avery. Description and ordering information.
  
  
• Coon N. 2006. Diabetes game: A teenager's guide to living well with diabetes. Portland, OR: Rewarding Health. Description and ordering information.
  
  
• Hanas R. 2005. Type 1 diabetes: A guide for children, adolescents and young adults and their caregivers. New York, NY: Marlowe & Company. Description and ordering information.
  
  
• Hargrave-Nykaza K. 2006. My child has diabetes: A parent's guide to a normal life after diagnosis. Lincoln, NE: iUniverse. Description and ordering information.
  
  
• Hendel. 2005. A child in your care has diabetes, 3rd ed. Paramus, NJ: Hen House Press. Available in English and Spanish. Description and ordering information.
  
  
• Kaufman FR. 2005. Diabesity: The obesity-diabetes epidemic that threatens America and what we must do to stop it. New York, NY: Bantam Books. Description and ordering information.
  
  
• Lawton SA, ed. 2006. Diabetes information for teens. Detroit, MI: Omnigraphics. Description and ordering information.
  
  
• Walsh J, Roberts R. 2006. Pumping insulin, 4th ed. San Diego, CA: Torrey Pines Press. Description and ordering information.
  
  
• Also see Children with Diabetes for book reviews for children and adolescents with type 1 diabetes and parents of children and adolescents with type 1 diabetes along with books about type 2 diabetes, cookbooks and nutrition, and meal-planning aids. Also see the ADA bookstore.
  

  
  

Electronic Newsletters and Online Discussion Groups for Families

• American Diabetes Association (ADA). ADA's set of electronic newsletters informs families about diabetes news, publications, and advocacy opportunities. ADA's message boards for adolescents and young adults with diabetes and parents of children with diabetes provide a forum for sharing ideas and opinions about living with diabetes.
  
  
• Children with Diabetes (CWD) Forums. Offers a collection of online discussion groups for parents, children, and adolescents with diabetes. Also offers chat rooms for parents, children, and adolescents to interact with others sharing similar experiences with diabetes.
  
  
• Joslin Diabetes Center. Offers several online communication opportunities for families:

  Discussion Boards. This set of online discussion groups offers communication opportunities for people with diabetes and their families. Each group is moderated by a health professional, and topics include type 1 and type 2 diabetes, nutrition, coping, insulin pumps, living with diabetes for adolescents, and living with diabetes for parents.

  JoslinCares. This quarterly newsletter offers personal stories about Joslin patients along with diabetes research and care news and information from the Joslin Clinic.

• Life with diabetes. This electronic newsletter published by the Juvenile Diabetes Research Foundation (JDRF) eight times a year provides information and support for families with a diagnosis of type 1 diabetes. Also see JDRF's Research frontline.
  

  
  

Author: Susan Brune Lorenzo, M.L.S., Maternal and Child Health Library.
Reviewers: Olivia K. Pickett, M.A., M.L.S., Maternal and Child Health Library; Jenny Smith, R.D., M.A., C.D.E., Dietitian for the Leadership Education in Adolescent Health (LEAH) program, Department of Pediatrics/Adolescent Medicine, Indiana University School of Medicine, and Diabetic Dietitian, Riley Hospital for Children.