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.

There is recognition of the importance of the psycho-social health of young adults as they transition to adult healthcare. An important key to success in the transition is the individual’s involvement and motivation. This understanding of the need to nurture psycho-social health will continue to underscore the work being done in the Transition work group.

The focus for the members of the Transition work group during the current grant year is in the following areas:

  • To assess health in young adults with genetic and metabolic conditions. 
  • To support and promote the work  of the  Face Forward Summer Conference for youth and young adults with genetic conditions, sponsored by Next Step, Inc.
  • To continue utilization of the Transition Toolkit including expansion of Metabolic Basics.
  • To develop methods for young adults to engage.
  • To participate in the National Coordinating Center (NCC) Transition Work Group, in which Susan Waisbren shares the lead role.

Accomplishments

In the last grant year, the Transition work group developed an educational brochure entitled "Moving on with Mito -  A Guide for Teens and Young Adults with Mitochondrial Disorders". This was finalized and published in November, 2014, and includes both "Basics" about mitochondrial disorders, an easily-to-understand description of health insurance, and an introduction to the Transition Toolkit, which was developed by the group previously. The brochure, which could be adapted to other conditions, is an example of excellent collaboration.

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, grew into the Face Forward Summer Conference for Youth sponsored by Next Step, Inc. This program offers teens and young adults the opportunity to learn tools for coping and managing their conditions and transitioning to independent living.

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.  Dr. Waisbren's publication resulting from the project, The adult galactosemic phenotypewas chosen as "best paper" in the Journal of Inherited Metabolic Disorders, 2013.