Search Results: MCHLine

Annotation: This project addressed the problem of fecal incontinence in children with myelomeningocele by developing an affordable instructional package for health care providers and a parent instruction program in order to help these children develop bowel control. Improvement was documented in half the children using this systematic home-based method. The training program included a videotape and written provider and parent manuals. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB93-152999.

Keywords: Bowel Control, Chronically Ill, Home-Based Health Care, Meningomyelocele, Parent Education Clinics, Spina Bifida Association, Spina Bifida Incontinence, Toilet Training

Annotation: This report presenting findings from an evaluation of the administration of spina bifida health care benefits for children of servicemembers and veterans by the U.S. Department of Veterans Affairs' Veterans Health Administration (VHA). Topics include the extent to which VHA conducts outreach about available benefits, what is known about available processed health care claims, and what oversight VHA conducts of the claims process. Recommendations for executive action are included.

Contact: U.S. Government Accountability Office, 441 G Street, N.W., Washington, DC 20548, Telephone: (202) 512-3000 Secondary Telephone: E-mail: [email protected] Web Site: http://www.gao.gov Available from the website. Document Number: GAO-14-564.

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Keywords: Access to health care, Administration, Children with special health care needs, Employee benefits, Federal programs, Health care utilization, Military, Outreach, Spina bifida, Utilization review

Annotation: This webcast focuses on efforts currently under way to decrease the prevalence of neural tube defects (NTDs) in the United States and discusses global strategies to reduce the burden of NTDs worldwide through mandatory fortification of staple foods with folic acid.The webcast also includes information about NTDs, a discussion of possible harmful effects of folic acid, and information about next steps in folic acid fortification. A video of the webcast and a PowerPoint presentation are available.

Contact: Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30329-4027, Telephone: (800) 232-4636 Secondary Telephone: (888) 232-6348 E-mail: [email protected] Web Site: http://www.cdc.gov Available from the website.

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Keywords: Anencephaly, Folic acid, Food additives, High risk groups, International health, Neural tube defects, Prevention, Public policy, Research, Spina bifida

Annotation: This podcast for consumers provides information about taking folic acid before and during pregnancy to help prevent neural tube defects, including spina bifida and anencephaly. The podcast explains why all women of childbearing age should take folic acid every day, discusses fetal development, and outlines different ways for women to ensure that they are taking in sufficient amounts of folic acid.

Contact: National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30329-4027, Telephone: (800) 232-4636 Secondary Telephone: (888) 232-6348 E-mail: [email protected] Web Site: http://www.cdc.gov/ncbddd Available from the website.

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Keywords: Anencephaly, Folic acid, Infant health, Neural tube defects, Pregnancy, Prevention, Reproductive health, Spina bifida

Annotation: This brochure, which is geared toward families who have had a pregnancy affected by a neural tube defect (NTD), provides an overview of NTDs, describes the three most common NTDs (anencephaly, spina bifida, and encephalocele), and explains that folic acid before pregnancy and early in pregnancy can reduce the risk of experiencing another pregnancy affected by an NTD.

Contact: National Birth Defects Prevention Network, 1321 Upland Drive, Suite 1561, Houston, TX 77043, E-mail: [email protected] Web Site: https://www.nbdpn.org Available at no charge; also available from the website.

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Keywords: Anencephaly, Encephalocele, Families, Folic acid, Neural tube defects, Pregnancy, Spina bifida

Annotation: This fact sheet includes data pertaining to the Neural Tube Defect Ascertainment Project. Data were provided by all 23 participating birth defects surveillance systems in March 2004 and covered approximately 2, 000, 000 births annually (approximately half of all U.S. births). Data are provided for spina bifida and anencephaly.

Contact: National Birth Defects Prevention Network, 1321 Upland Drive, Suite 1561, Houston, TX 77043, E-mail: [email protected] Web Site: https://www.nbdpn.org Available from the website.

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Keywords: Anencephaly, Data, Neural tube defects, Population surveillance, Spina bifida

Annotation: This issue of the Morbidity and Mortality Weekly Report presents data to assess the impact of efforts to prevent neural tube defects (NTDs) through increased folic acid consumption. Article contents include results of surveys of selected populations of serum folate levels and prevalence of spina bifida and anencephaly.

Contact: Centers for Disease Control and Prevention, 1600 Clifton Road, Atlanta, GA 30329-4027, Telephone: (800) 232-4636 Secondary Telephone: (888) 232-6348 E-mail: [email protected] Web Site: http://www.cdc.gov Available at no charge; also available from the website.

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Keywords: Anencephaly, Congenital abnormalities, Disease prevention, Folic acid, Neutral tube defects, Prenatal care, Program evaluation, Public awareness campaigns, Spina bifida, Statistics, Surveys

Annotation: This self-contained Web-based module aims to train health professionals and students to counsel on the benefits of folic acid in the prevention of birth defects and other conditions. It takes approximately 30 minutes to complete. It contains instruction about how folic acid works in the body and how it prevents birth defects and other conditions, and contains a resource list including a glossary, and materials for provider and patient education.

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Keywords: Anencephaly, Congenital abnormalities, Disease prevention, Electronic publications, Folic acid, Neutral tube defects, Prenatal care, Professional education, Spina bifida, Training materials

Annotation: This manual, a product of an interagency project between the Virginia Departments of Health and Education, is a guide for parents and professionals on the management of nutrition problems of school children with special needs. It helps school personnel plan nutrition services for students who have special health needs or are chronically ill. The information included facilitates the management of special diets and the expansion of nutrition education in the school curriculum. It includes information on these topics: common nutrition problems and interventions during the school day; dietary considerations of specific conditions and related factors; and nutrition goals and objectives for the individualized education program. Dietary considerations and sources of information and/or nutrition education materials for the following conditions are discussed: cerebral palsy, cystic fibrosis, diabetes mellitus, Down syndrome, juvenile rheumatoid arthritis, phenylketonuria, seizure disorders, spina bifida, constipation, feeding abnormalities, and tube feeding. Nine case studies are presented. The appendix includes information on lunch menu ideas for special diets, nutritious snacks, textural modifications, arthritis diet and drugs, complications of tube feeding, and PKU diet free foods. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available for loan. Document Number: HRSA Info. Ctr. MCHI113.

Keywords: Cerebral palsy, Children with special health care needs, Constipation, Cystic fibrosis, Diabetes mellitus, Down syndrome, Enteral nutrition, Epilepsy, Feeding disorders, Individualized education programs, Juvenile rheumatoid arthritis, Nutrition, Phenylketonuria, School food services, Spina bifida

Annotation: This report gives information on a technical assistance project for the North Carolina Department of Environment, Health, and Natural Resources Division of Maternal and Child Health. The project examined practice guidelines to promote health care quality for children with special health needs as their care was expected to migrate to a Medicaid managed care system. The report includes a summary of guidelines for children with the following conditions: asthma, attention deficit hyperactivity disorder, cerebral palsy, congenital deafness, cystic fibrosis, diabetes, sickle cell disease, and spina bifida. The report also identifies the sources of these guidelines. [Funded by the Maternal and Child Health Bureau]

Contact: Altarum Institute, 3520 Green Court, Suite 300, Ann Arbor, MI 48105, Telephone: (734) 302-4600 Secondary Telephone: (800) 879-6505 Fax: (734) 302-4991 Web Site: http://www.altarum.org/contact Available from the website.

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Keywords: Asthma, Attention deficit disorder, Cerebral palsy, Children with special health care needs, Cystic fibrosis, Deafness, Diabetes mellitus, Guidelines, Hyperactivity, North Carolina, Quality assurance, Sickle cell disease, Spina bifida, Standards, State health care reform, Technical assistance

Annotation: This study sought to establish the potential benefit of preconceptional vitamin supplementation in reducing the incidence of neural tube defects (NTDs), and examined some of the potential hazards of excessive preconceptional vitamin supplementation. The primary hypotheses were: (l) Multivitamin supplementation in the month immediately preceding the last menstrual period (LMP) is associated with a 50 percent reduction in NTDs; and (2) folate supplementation in the month immediately preceding the LMP is associated with a 50 percent reduction in NTDs. A secondary hypothesis was that excessive supplementation with vitamins or minerals in the month either preceding or including conception or in the months following conception increases the risk of selected birth defects. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB96-183413.

Keywords: Birth Defects, High risk groups, High risk mothers, Nutrition, Spina Bifida

Annotation: This study was designed to examine families' perceptions of the processes and results of care coordination provided by Title V programs. Although no significant differences in hospital, physician, emergency room, or other health care utilization by provision or type of care coordination were expected, it was hypothesized that certain types or availability of care coordination would diminish perceived unmet needs and would be associated with improved psychological functioning of children and parents and increased satisfaction with health services in general. Analysis of survey responses, received from 562 families with children with special health care needs in 6 States, revealed major differences in the types of services that families perceived they obtained from care coordinators. Family perceptions of whether or not they received case management services appeared to vary substantially from those of the relevant agencies and many families reported receiving case management services from other agencies in addition to the Title V agency. Little or no association was found between the presence, absence, or type of care coordination and such outcome variables as utilization of services, maternal mental health, child functioning, or satisfaction. [Funded by the Maternal and Child Health Bureau]

Contact: National Technical Information Service, O.S. Department of Commerce, 5301 Shawnee Road, Alexandria, VA 22312, Telephone: (703) 605-6050 Secondary Telephone: (888) 584-8332 E-mail: [email protected] Web Site: http://www.ntis.gov Document Number: NTIS PB94-218641.

Keywords: Bronchopulmonary Dysplasia, Case Management, Chronic illnesses and disabilities, Community-Based Health Care, Coordination of Health Care, Data Collection, Families, Spina Bifida

Annotation: This manual results from a series of weekend workshops for adolescents with myelomeningocele that were held by the Newington Children's Hospital in Newington, Connecticut. The workshops were designed to increase the adolescents' social skills and ability to be more independent, and included games, instruction in managing wheelchairs, discussions on sexuality, parents discussions, etc. The manual discusses the theory base for holding workshops, gives a step-by-step description of how to plan the workshops, describes social experiences and workshop contents, and discusses program evaluation. [Funded by the Maternal and Child Health Bureau]

Contact: Maternal and Child Health Library at Georgetown University, E-mail: [email protected] Web Site: https://www.mchlibrary.org Available from the website.

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Keywords: Adolescent health, Habilitation, Meningomyelocele, Special health care needs, Spina bifida