This summer, just prior to the 2013 Annual Connect Conference in Baltimore, a group of 40 parents, advocates, and professionals gathered for two days to discuss the needs, and how best to meet the needs, of individuals living with Duchenne.  Historically, Duchenne has been a pediatric diagnosis with no need to discuss adolescent and adult issues – thankfully, those discussions are now very much needed.  The need now is to focus on Lifespan Care: identifying the needs of children, adolescents and young adults, and developing and identifying comprehensive programming and tools that will help address those needs.

 

“Transition” means moving from one thing to another.  Transition in the medical world has been defined as the “purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with chronic physical and medical conditions as they move from child-centered to adult oriented health care systems (Hudsmith and Thorne, 2007).” 

 

Clearly, a comprehensive transition program should start much earlier than adolescence, and, ideally, should begin at diagnosis, with age-appropriate education around the diagnosis.  Medical care should be uninterrupted, age and developmentally appropriate, flexible and comprehensive.  The goals of a comprehensive transition program should be to promote skills in communication, decision-making, self-management and self-advocacy, personal and medical independence. Individuals should gain a sense of control over their health, healthcare decisions, and their psychosocial environment.

 

A comprehensive transition program should contain several elements:

  • Diagnosis curriculum: disease specific knowledge, medications, signs/symptoms of an emergency, health maintenance, disease management
  • Age-appropriate curriculum:  healthy lifestyle, family and relationship planning, psychosocial issues independent communication, decision making, self-care and management
  • Educational and vocational planning: developing a life plan with appropriate career choices, continuous medical coverage, living arrangements, and advanced directives

 

The meeting in Baltimore built on the accomplishments of the first expert meeting on Transition, which was held in Amsterdam, Netherlands, June 2011 (Schran, et al.  Transition in Duchenne Muscular Dystrophy: An expert meeting report and description of transition needs in an emergent patient population.  Neuromuscular disorders, 2012). 

 

The first meeting identified five topics, believed to be important and necessary to include in a comprehensive transition program:

  • Starting Early
  • Facilitating difficult conversations
  • Managing difficult transitions
  • Adjusting to a changing body
  • Patient styles and coping

 

The process of transition was loosely divided into three stages.  These stages are not discrete, and an individual might be in different stages for different topics.  The three stages were identified as:

  • Phase I:   diagnosis through late ambulatory
  • Phase II:  early non-ambulatory through late non-ambulatory
  • Phase III: late non-ambulatory and beyond

 

Over the next several months, I will present the finding of this meeting, along with resources around the five topics for each of the three stages. 

To start, here are several online resources that we found that were very helpful:

 

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