Developed by Susan Waisbren, PhD, at Boston Children's Hospital, 2015
This policy is for staff at Metabolism Clinics in the New England Region who are caring for patients aged 12-17 with metabolic disorders. The policy is structured around best practices in enabling patients to transition successfully to adult health care. It includes information about guardianship, healthcare proxies, parent and patient visiting policies, inpatient visits, medical records, and our Transition Toolkit for teens, among other resources.
This introduction for adolescents, young adults, and families explains the steps to take as teens and young adults with metabolic disorders transition to caring for their own health. It includes information about independent health care visits, guardianship, healthcare proxies, medical records confidentiality, and our Transition Toolkit.
This exceptional educational brochure was developed in 2014 by Susan Waisbren, PhD, at Children's Hospital Boston, and Robert Auffrey, Health Communications graduate student at Emerson College, Boston. Topics include:
- Basics about mitochondrial disorders
- Achieving Life Goals
- Personal Stories
- The Adult Health Care System
- About Transition & the Transition Toolkit
This toolkit was developed to help teenagers and young adults prepare for transitioning to the adult health care system.
The links below go to the New England Consortium of Metabolic Programs website at Children's Hospital Boston, where the toolkit was developed with Innovative Project award funding from the NEGC.
- Instructions for using the Toolkit
- Health Readiness Assessment
- Are you ready to handle your own health care as an independent adult?
- Medical Health Summary
- Use this form to save important information about your health.
- Transition Plan
- Fill this out with your health care provider, to help you transition to being in control of your own health.
- Metabolic Condition Basics for PKU, Galactosemia; Biotinidase Deficiency, Homocystinuria, and Ornithine Transcarbamylase (OTC) Deficiency
- Learn some of the basics about your metabolic condition.
- In our work at the NEGC we learned that pediatricians also found these helpful!
Part of the Transition Toolkit described above, Metabolic Basics are 1 page fact sheets designed to help individuals understand their inherited metabolic conditions, and to explain them to families, schools, friends, and care providers. Each includes concise user-friendly sections on medical issues for teens and young adults, and on fertility and pregnancy.
Metabolic Basics are available on the New England Consortium of Metabolic Programs website (see links below), under Transition Toolkit. Of all the elements in the Transition Toolkit, the Metabolic Basics have reportedly been used the most!
These resources, developed at Children's Boston, are for teachers working with students who have galactosemia:
- Understanding Galactosemia
- an introductory guide for educators, featuring a basic description of galactosemia, suggested teaching strategies, classroom managment ideas, and additional resources
- Galactosemia - Resources for Educators
- a detailed guide for educators with in-depth information about galactosemia, about special challenges for students with the condition, and featuring information about therapies, classroom environment, lesson planning, teaching technologies, and other resources
Moving Forward: Your Guide to Galactosemia and POI is a comprehensive five-part guide, produced at Childrens Hospital Boston.
It 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 you need.
It also provides a list of resources, and a glossary of medical terms.
A Guide for Prenatal Educators was developed at Children's Boston and contains information and resources based on recommendations by the American Academy of Pediatrics. Included information and resources for parents, as well as information about each metabolic disorder including incidence rate, a brief definition, and recommmended treatment options.
The PKU Toolkit, developed at Children's Boston, 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 information, resources, checklists, and quizzes to help you better manage your PKU.
Also included is information about new, more convenient and tasty options in PKU formula and low-protein foods. Reading this toolkit can also be useful for family, friends and significant others of adults with PKU.