Transition: Activities
The overall goal of this work group is to develop effective practice models for adolescents and young adults with genetic conditions who are transitioning from pediatric care to adult health care. Objectives for the 2010-2011 year include: - Develop an assessment tool for measuring successful transition to a Medical Home.
- Continue to publish, present and disseminate a transition related agenda.
- Create materials for youth and adults related to transition.
- Continue to pilot transition practices at Children's Hospital Boston.
Accomplishments Under the leadership of Dr. Susan Waisbren, the Transition workgroup collaborated in the development of 3 tangible tools for use by youths in their transition to adult healthcare: 1) the “Transition Plan”, which was adapted from the Medical Home care coordination plan; 2) Personal health history; and 3) a readiness questionnaire: “Are You Ready to Take Care of Your Health Needs?” The Transition work group, through on-going conferences and surveys, contributed to developing leadership training for teens with genetic disorders. “Teen Challenge Program”, an annual weekend leadership training program, offered teens the opportunity to learn tools for coping and managing their conditions. The Teen Challenge weekend was held in August 2009. Through the support of the NEGC, Dr Waisbren developed the “Symposium for Adults with Galactosemia” held in 2009. This conference brought together 34 adults with galactosemia. The attendees participated in the first prospective research study conducted on adults with this genetically inherited condition. In addition to educational and peer support sessions, the attendees received information and materials on Transition. Current Work
The Transition work group will continue its progress to inform and assist the process of Transition through developing practical tools, research and collaboration.
The Transition work group will integrate areas of their work with the work of the Medical Home work group where common interests overlap.
Some of the specific efforts being made this year include the creation of additional materials for youths and adults with specific metabolic disorders, a review of all the New England states’ Transition activities, another Teen Challenge Weekend, and the development of an assessment tool for measuring the successful transition to medical home. The work group will also hold a conference for adults with metabolic disorders.
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