Transitioning pediatric patients with special health care needs to adult health care can be a challenge for patients and their families, and for their health care providers as well. This section contains transition resources and information for health care professionals and for their patients.
The Children’s Hospital Boston Transition Toolkit was created for teenagers who are transitioning to adulthood, and who are ready to be in charge of managing thier metabolic condition and their health in general. The toolkit includes basic FAQs about various metabolic conditions, a health summary form for teens to fill out and keep in a safe place for future reference, and a transition plan for teens to discuss and fill out with their primary care provider and metabolic specialist.
PKU Primer for Adolescents and Adults
This detailed guide is for for health care providers who treat adolescent and adults with PKU. It is designed for distribution and discussion, and includes: a definition of PKU, a description of how it is inherited, how to maintain a healthy diet, how to handle school/work, and details about maternal PKU and maintaining a health pregnancy.
This toolkit is designed to be a personal guide for teens and young adults with PKU, including comprehensive information about nutrition, diet, treatment, and lifestyle issues. It provides resources, checklists, and quizzes to help young adults better manage thier PKU. Also included is information about new options in PKU formula and low-protein foods. Reading the toolkit can also be useful for family, friends and significant others of teens and adults with PKU.
Moving Forward: Your Guide to Galactosemia and Primary Ovarian Insufficiency (POI)
This comprehensive five-part guide, produced at Children’s Hospital Boston, contains sections for teens and women who have galactosemia and POI, and for their family members. The guide explains the symptoms and underlying causes in easy-to-understand terms, and outlines ways of getting the care and support patients and families need. It also provides a list of resources, and a glossary of medical terms.
An exciting, three-day, summer event designed especially for teenagers (ages 13-18 years) with PKU or other metabolic conditions. The program is offered through the Metabolism program at Children’s Hospital Boston, and is designed to help teens build a supportive social network, try new and challenging activities, build resiliency and self-confidence, and build skills for independent health managment.
Survey: Transition services lacking for teens with special needs – This three-page article, published in the News Magazine of the American Academy of Pediatrics (AAP), presents the results of a recent AAP survey of medical fellows, and sheds light on strategies physicians use to transition their patients, as well as obstacles and lack of support and resources they frequently encounter.