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Items in this list may be obtained from the sources cited. Contact information reflects the most current data about the source that has been provided to the MCH Digital Library.


Displaying records 1 through 15 (15 total).

Spencer C. n.d.. Regional Center for Children with Rheumatic Diseases [Final report]. New Orleans, LA: Children's Hospital, 33 pp.

Annotation: The purpose of this project was to increase access of pediatric rheumatology patients to the team approach, improve regional care, provide psychosocial counseling and support, increase knowledge of medical professionals and the lay public, and provide cost-effective, outpatient care. [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 PB93-165686.

Keywords: Arthritis, Children with special health care needs, Multidisciplinary teams, Pediatric rheumatology, Rheumatic diseases

Lindsley C. n.d.. Mid-America Pediatric Rheumatology Outreach Program: [Final report]. Kansas City, KS: University of Kansas Medical Center, Department of Pediatrics, 18 pp.

Annotation: The goal of this project was to establish a network of care that provided early and effective intervention for children with rheumatic disease in a four State area including Kansas, Western Missouri, Nebraska, and Iowa. Two specific components were clinical service and education. [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 PB93-153005.

Keywords: Arthritis Service coordination, Children with special health care needs, Infants with special health care needs, Pediatric rheumatology, Rheumatic diseases

Schaller J. n.d.. The Affiliated Children's Arthritis Centers of New England [Final report]. Boston, MA: New England Medical Center, Department of Pediatrics, 52 pp.

Annotation: The purpose of this project was to improve the health care delivered to children with rheumatic diseases in New England. [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 PB93-158707.

Keywords: Arthritis, Children with special health care needs, Community based services, Coordinated care, Interdisciplinary teams, Rheumatic diseases

Sherman B. n.d.. Home-Based Support Services for Chronically Ill Children and Their Families [Final report]. Albany, NY: New York State Department of Health, 35 pp.

Annotation: This project sought to demonstrate that a system of reimbursable, cost-effective, home-based support services can be implemented for families with chronically ill children. The project objectives were to facilitate the provision of home-based care for chronically ill children through the following activities: (1) Developing a regional network of medically skilled respite providers; (2) establishing self-help mutual support groups for chronically ill children and their parents and siblings; (3) training professionals, paraprofessionals, and volunteers; and (4) disseminating project findings and recommendations. [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 PB93-158699.

Keywords: Arthritis, Asthma, Bronchopulmonary Dysplasia, Chronic illnesses and disabilities, Congenital Heart Disease, Cystic Fibrosis, Families, Feeding Disorders, Hemophilia, Home-Based Health Care, Kidney Disease, Leukemia, Low income groups, Muscular Dystrophy, Nurses, Respiratory Technologies, Respite Care, Sick Kids (Need) Involved People (SKIP), Sickle Cell Disease, Support Groups, Tay-Sachs Disease, Ventilator Dependence

Levinson J. n.d.. Regional Comprehensive Care Program for Juvenile Connective Tissue Diseases [Final report]. Cinicinnati, OH: Children's Hospital Medical Center, Special Treatment Center for Juvenile Arthritis, 48 pp.

Annotation: This project provided comprehensive services (including early diagnosis, continuity of treatment, and case management by an interdisciplinary team) to juveniles with connective tissues diseases. Activities included providing services in forty-eight counties in Indiana, Kentucky, Ohio, and West Virginia; collecting clinical, treatment, and demographic data on all patients; and developing regional networks of health professionals. [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 PB93-161883.

Keywords: Adolescents, Appalachians, Chronically Ill, Connective Tissue Diseases, Data Collection, Juvenile Rheumatoid Arthritis, Patient Education, Rehabilitation, Rheumatic Diseases, Systemic Lupus Erythematosus

Brady TJ. [2011]. Outreach strategies to enhance CDSMP enrollment. Atlanta, GA: Centers for Disease Control and Prevention, 75 pp.

Annotation: These presentation slides from Michigan Partners on the PATH Statewide Meeting March 9, 2011, focus on outreach strategies to increase enrollment in the Centers for Disease Control and Prevention's Chronic Disease Self-Management Program for the management of arthritis. Topics include outreach to consumers, outreach to health professionals, increasing recommendations and referrals from health professionals, awareness of programs, marketing, media, and pilot-testing.

Contact: Healthy Programs in Michigan, MI E-mail: [email protected] Web Site: http://www.mihealthyprograms.org Available from the website.

Keywords: Arthritis, Chronic illnesses and disabilities, Disease management, Marketing, Mass media, Outreach, Programs

National Center for Chronic Disease Prevention and Health Promotion. 2005. State programs in action: Exemplary work to prevent chronic disease and promote health. Atlanta, GA: National Center for Chronic Disease Prevention and Health Promotion, 84 pp.

Annotation: This document provides examples of state-based programs that make a substantial contribution to reducing the burden of chronic disease in the United States. Topics include aging, arthritis, block grants: preventing chronic disease, cancer, diabetes, healthy mothers and healthy babies, healthy youth, heart disease and stroke, nutrition and physical activity, oral health; prevention research enters, racial and ethnic approaches to community health, and tobacco.

Contact: National Center for Chronic Disease Prevention and Health Promotion, 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: https://www.cdc.gov/chronicdisease/index.htm Available from the website.

Keywords: Adolescent health, Arthritis, Block grants, Cancer, Child health, Chronic illnesses and disabilities, Communities, Community programs, Diabetes mellitus, Disease prevention, Health promotion, Heart diseases, Infant health, Maternal health, Model programs, Nutrition, Oral health, Physical activity, State programs, Strokes, Tobacco

Hankinson SE, Colditz GA, Manson JE, Speizer F, Manson JE, eds. 2001. Healthy women, healthy lives: A guide to preventing disease from the landmark Nurses' Health Study. New York, NY: Simon and Schuster, 546 pp.

Annotation: This book presents information from the Nurses' Health Study on a woman's probability of developing specific diseases and suggests how that probability may change with certain alterations in diet, weight control, physical activity, and other lifestyle changes. Part one discusses the Nurses' Health Study and what observations have been made by researchers and what they mean to the study of women's health issues. Part two provides information and suggestions on lowering the risk of diseases. Topics covered include coronary heart disease, different types of cancers, stroke, diabetes, osteoporosis, asthma, arthritis, age-related eye disease, and Alzheimer's disease. The third part provides information on changing behaviors including physical activity, weight control, smoking, nutrients, foods, alcohol, vitamins and minerals, postmenopausal hormones, birth control, and pain relievers. The appendices give information on types of epidemiological studies; being an informed consumer of health information; and a section on tables on weight and nutrition. The book concludes with a glossary, selected readings, and an index.

Contact: Simon and Schuster, 1230 Avenue of the Americas , New York, NY 10020, Telephone: (212) 698-7000 Web Site: http://www.simonsays.com/ Available in libraries. Document Number: ISBN 0-684-85519-4.

Keywords: Alcohols, Alzheimers disease, Analgesic drugs, Antiinflammatory drugs, Arthritis, Asthma, Breast cancer, Cancer, Colon cancer, Coronary care, Diabetes mellitus, Disease prevention, Eye diseases, Family planning, Food, Hormone replacement therapy, Life cycle, Lung cancer, Menopause, Minerals, Nutrition, Osteoporosis, Ovarian cancer, Physical activity, Physical activity, Physical fitness, Reproductive health, Research programs, Skin cancers, Smoking, Strokes, Vitamins, Weight management, Women', Women', s health, s health promotion

Rapoff M. 1997. Prevention of Medication Compliance Problems in Children with Juvenile Rheumatoid Arthritis: [Final report]. Kansas City, KS: University of Kansas, 26 pp.

Annotation: This study was a randomized, two-group trial of a program to strengthen compliance with medication regimes among children with juvenile rheumatoid arthritis. The experimental prevention component includes: 1) written and videotaped educational materials aimed specifically at preventing and managing compliance problems; 2) instruction by a nurse practitioner in behavioral strategies for improving compliance; and 3) followup telephone contacts in which these strategies are reinstated. Both the literature and previous research by this research team suggests that a combination of educational and behavioral management strategies can be effective at improving compliance in patients who previously had been noncompliant. [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 PB99-107229.

Keywords: Children with Special Health care Needs, Chronic Illnesses and Disabilities, Juvenile Rheumatoid Arthritis, MCH Research, Patient compliance, Preventive Health Care Education, Research, Rheumatic Diseases

Horsley JW, Allen ER, Daniel PW. 1996. Nutrition management of school age children with special needs: A resource manual for school personnel, families, and health professionals = Nutrition management of handicapped and chronically ill school children: A resource manual for school personnel, families and health professionals. (2nd ed.). Richmond, VA: Virginia Department of Health and Virginia Department of Education, 93 pp.

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

Affiliated Children's Arthritis Centers of New England. 1990. Physical therapy standards of care for children with chronic arthritis. Boston, MA: The Affiliated Children's Arthritis Center of New England, 23 pp.

Annotation: This document consists of the standards of care developed by the Affiliated Children's Arthritis Centers of New England (ACACNE) for physical therapy in treatment of children with arthritis. The standards are meant to serve as guidelines for each of the 13 tertiary pediatric institutions located in six New England states in the ACACNE program. Topics covered include the principles of exercise and activity, assessment, problem and goal identification, the treatment plan, child and family education, the physical therapist as a member of the health care team, and physical therapist qualifications. A 3-page bibliography is included. [Funded by the Maternal and Child Health Bureau]

Keywords: Juvenile arthritis, Juvenile rheumatoid arthritis, Physical therapy, Standards

White PH. 1989. Future directions of pediatric rheumatology: A consensus conference. Washington, DC: Children's National Medical Center, 45 pp.

Annotation: This report gives the recommendations of various sessions held at a conference on pediatric rheumatology. Sessions include networking, research, team care financing, community-based family-centered care, legislation, databases and training. [Funded by the Maternal and Child Health Bureau]

Keywords: Juvenile arthritis, Pediatric rheumatology

Athreya B. 1987 (ca.). Regional Pediatric Rheumatology Program of Eastern Pennsylvania [Final report]. Philadelphia, PA: Children's Seashore House and Children's Hospital of Philadelphia,

Ross Conference in Pediatric Research (80th: 1979: Freeport, Bahamas). 1981. Arthritis in childhood. Columbus, OH: Ross Laboratories, 134 pp.

Contact: Ross Laboratories, Consumer Relations, 625 Cleveland Avenue, Columbus, OH 43215-1724, Telephone: (800) 227-5767 Secondary Telephone: (614) 624-7485 Contact Phone: (614) 227-3333 Web Site: http://www.ross.com Available in libraries.

Keywords: Conferences, Juvenile arthritis

Office for Maternal and Child Health; Children's Hospital of Los Angeles; University of Southern California School of Medicine. 1980. Proceedings of Model Community Program for Arthritic Children. [Los Angeles, CA: University of Southern California School of Medicine?], 123 pp.

Annotation: These proceedings of a conference held October 9-11, 1980, are aimed at designing a comprehensive program for the care of children with rheumatic disease, and cover these topics: the rheumatic diseases of childhood; problems related to the management of juvenile rheumatoid arthritis; the costs of care; education for family and health professionals; federal agencies with a role in the provision of services for handicapped children; state agencies, community programs, and models of comprehensive care; the plan for comprehensive care for children with rheumatic disease; and program evaluation. [Funded by the Maternal and Child Health Bureau]

Keywords: Conference proceedings, Juvenile rheumatic arthritis, Model programs

   

The MCH Digital Library is one of six special collections at Geogetown University, the nation's oldest Jesuit institution of higher education. It is supported in part by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under award number U02MC31613, MCH Advanced Education Policy with an award of $700,000/year. The library is also supported through foundation and univerity funding. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.