Biomaterial Database

A community outreach program for individuals with Prader-Willi syndrome. 1990

L R Greenswag

Individuals with Prader-Willi Syndrome (PWS) face life with multifaceted problems that hinder adaptation to daily life. Helping this population presents a major challenge to health professionals. With few exceptions, primary providers lack support systems essential for effective management. The Iowa Child Health Specialty Clinics (CHSC) has pioneered an outreach program for affected children, their families, and primary providers. Community-based services provided by a CHSC regional nurse and PWS consultant emphasize education, communication, networking services, case review, and pragmatic approaches to care. Satisfaction with initial outreach has been high. This discussion proposes to better prepare nurses to appreciate needs of individuals with PWS and their families and to function as coordinators of services.

UI	MeSH Term	Description	Entries
D007223	Infant	A child between 1 and 23 months of age.	Infants
D007231	Infant, Newborn	An infant during the first 28 days after birth.	Neonate,Newborns,Infants, Newborn,Neonates,Newborn,Newborn Infant,Newborn Infants
D007484	Iowa	State bounded on the north by Minnesota, on the east by Wisconsin and Illinois, on the south by Missouri, and on the west by Nebraska and South Dakota.
D010347	Patient Care Planning	Usually a written medical and nursing care program designed for a particular patient.	Nursing Care Plans,Goals of Care,Plans, Nursing Care,Care Goal,Care Goals,Care Plan, Nursing,Care Planning, Patient,Care Plans, Nursing,Nursing Care Plan,Plan, Nursing Care,Planning, Patient Care
D011218	Prader-Willi Syndrome	An autosomal dominant disorder caused by deletion of the proximal long arm of the paternal chromosome 15 (15q11-q13) or by inheritance of both of the pair of chromosomes 15 from the mother (UNIPARENTAL DISOMY) which are imprinted (GENETIC IMPRINTING) and hence silenced. Clinical manifestations include MENTAL RETARDATION; MUSCULAR HYPOTONIA; HYPERPHAGIA; OBESITY; short stature; HYPOGONADISM; STRABISMUS; and HYPERSOMNOLENCE. (Menkes, Textbook of Child Neurology, 5th ed, p229)	Labhart-Willi Syndrome,Royer Syndrome,Labhart-Willi-Prader-Fanconi Syndrome,Prader Labhart Willi Syndrome,Prader-Labhart-Willi Syndrome,Royer's Syndrome,Willi-Prader Syndrome,Labhart Willi Prader Fanconi Syndrome,Labhart Willi Syndrome,Prader Willi Syndrome,Royers Syndrome,Syndrome, Labhart-Willi,Syndrome, Labhart-Willi-Prader-Fanconi,Syndrome, Prader-Labhart-Willi,Syndrome, Prader-Willi,Syndrome, Royer,Syndrome, Royer's,Syndrome, Willi-Prader,Willi Prader Syndrome
D002648	Child	A person 6 to 12 years of age. An individual 2 to 5 years old is CHILD, PRESCHOOL.	Children
D002675	Child, Preschool	A child between the ages of 2 and 5.	Children, Preschool,Preschool Child,Preschool Children
D003153	Community Health Services	Diagnostic, therapeutic and preventive health services provided for individuals in the community.	Community Health Care,Community Healthcare,Health Services, Community,Services, Community Health,Community Health Service,Health Care, Community,Health Service, Community,Healthcare, Community,Service, Community Health
D006801	Humans	Members of the species Homo sapiens.	Homo sapiens,Man (Taxonomy),Human,Man, Modern,Modern Man
D006815	Hunger	The desire for FOOD generated by a sensation arising from the lack of food in the STOMACH.