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Transitioning from Pediatric to Adult Care: Taking Control of Your Care

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Description

Transitioning your child from pediatric to adult care can be difficult and scary, especially if you have a child with a rare disease aplastic anemia, MDS or PNH. Fortunately, there are proven steps that you can take to make this transition smoother.

During this program, recorded on June 28, 2016, Dr. Pulsipher provides the physician’s perspective. First, he helps you understand how the pediatric care approach and adult care differ. Next he discusses the importance of having a care transition conversation with your child’s hematologist/oncologist. This will include some specific advice and suggestions for topics to cover and questions to ask.

After Dr. Pulsipher, you will hear from Catherine, a close volunteer and advocate for the Aplastic Anemia and MDS International Foundation. She discusses her transition journey from pediatric to adult care and recommends tips and steps that can help create an organized transition for a young person as they acquire independent health care skills and prepare for an adult model of care.

At the end of this program you will understand:

  • How the adult care approach differs from the pediatric care approach
  • Key topics you and your child need to include in a transition conversation with your child’s pediatric care doctor
  • Steps you can take to best support your child with managing the transition to adult care
To download the transcript for this program:
  • Select Resources tab
  • Download PDF of transcription

Contributors

  • Michael Pulsipher, MD

    Dr. Pulsipher joined the Children’s Center for Cancer and Blood Diseases as the Head of the Section of Blood and Marrow Transplantation (BMT) and as BMT Clinical Research Chair in 2015 at the Children's Hospital of Los Angeles. He is currently group chair of the Pediatric Blood and Marrow Transplant Consortium – an 80-member international clinical trials group—and is recognized as a leading influence in the field of pediatric BMT. He is currently principal or co-principal investigator on six national, multi-center studies and a co-investigator on multiple additional clinical trials. Dr. Pulsipher has authored more than 140 articles in peer-reviewed journals including Journal of Clinical Investigation, Blood, andNature Genetics. He has also written five book chapters and presented widely at national and international conferences.

  • Catherine MacLean

    Catherine MacLean is a 20 year survivor of aplastic anemia. Catherine and her family benefited enormously from the support and information provided by AAMDSIF from the early days of her illness through her successful bone marrow transplant in 2001. Shortly after, Catherine began donating the proceeds from an annual event she organized, called Catherine's Craft Fair, to the Foundation. This fundraiser ran for ten years under Catherine's direction and was passed on to her two younger brothers for four additional years. During this time, Catherine advocated on behalf of AAMDSIF through Capitol Hill Day in 2008 and other awareness campaigns. She also volunteered at several Patient and Family Conferences. In the summer of 2013, she designed and completed a research project for the Foundation studying the transition from pediatric to adult care and opportunities to build community for young adult bone marrow failure patients through a grant from Wesleyan University, and traveled to AAMDSIF to present her findings. She was honored to be a recipient of both the Harry Carson and Michael Debono Memorial scholarships through the Foundation and continues to support the Foundations' efforts to provide answers, support, and hope to patients living with bone marrow failure diseases.