A community outreach program for individuals with Prader-Willi syndrome

Abstract

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.