Committees

Life Span Care

Members
Deborah E. Thorpe, PhD, PT  (Chair)
Garey Noritz, MD  (Chair-Elect)
Edward A. Hurvitz, MD  (Past Chair)
David L. Oleson, PT
Dianne L. Hrubec, MS, PT
Helen M. Somerville, MB, BS
Aloysia L. Schwabe, MD
Gary Stobbe, MD
Wilma M. A. Van Der Slot, MD
Rita N. Ayyangar, MD
Peggy M. Mohr, PhD, PT
Nancy A. Cicirello, PT, EdD
M. Wade Shrader, MD
Margaret A. Turk, MD
Jan Willem Gorter, MD, PhD, FRCP(C)
Lesley E. Wiart, PhD PT  (Board Liaison)

NEW: Got Transition? is a national resource for health care professionals, families, youth, and state policy makers focusing on a young adult's transition from pediatric to adult health care. This site serves as the basis for an information exchange about health care transition, particularly as pertaining to youth with special health care needs. Transition tools and tips and other resources are available under each of the main categories of Youth, Family, Providers and States.

Please view the DMCN Supplement (51:s4) from the workshop Adults with Cerebral Palsy: A Workshop to Define the Challenges of Treating and Preventing Secondary Musculoskeletal and Neuromuscular Complications in This Rapidly Growing Population.

Committee Purpose

To encourage and provide leadership in developing interdisciplinary educational programs for the membership of the AACPDM on Lifespan care issues including transition to adulthood, aging, and adult outcomes.

To foster attitudinal changes so that preparation for transition can begin in infancy and early childhood, recognizing that there are transitions throughout development and the whole lifespan that require attention and preparation.

To promote recognition of the need for consumer input and dialogue in planning educational, clinical, and research programs.

To address the needs for formal study and research in adult outcomes of interventions for children with developmental disabilities.

To provide leadership in exploring and advocating for models of care and service provision which meet the medical, psychosocial, emotional, educational, vocational, and housing needs of adolescence and adults with developmental disabilities.

Adult CP Resource

Adults with CP and other pediatric onset disabilities often face challenges finding providers interested and trained to care for their issues. The providers on this list of AACPDM members have all indicated that they have interest and experience with adults. If you are an AACPDM member who is a care provider for adults with pediatric onset disabilities, and would like to be included on this list, please send an email to ehurvitz@umich.edu. If you are not an AACPDM member, please consider joining! There are many benefits, and many courses and presentations related to the care of adults.

2010 Annual Meeting (Washington, D.C.)

Life Span Care Committee Specialty Day Course:
The Journey Continues: Moving Forward with a Health Care Model for Adults with Childhood Onset Disabilities
The course reviewed the state of the science for treating adults with childhood onset disabilities, looked at the consumer perspective for accessing the current healthcare system, and set a framework for future research and developing guidelines of care. The course began with introductions by moderator Rona Linroth, PhD, of Gillette Specialty Hospital in St. Paul Minnesota, and by Laura Tosi, MD (orthopedic surgery), from Washington, D.C. John Reiss, Ph.D., a psychologist the University of Florida in Gainesville on models of care for transitioning from pediatric to adult care, including criteria that can be used to determine readiness to move care from the pediatric to the adult setting and potential measures of transition outcomes ("success"). Next, Deborah Thorpe, PT, PhD of the University of North Carolina moderated a panel on common secondary medical conditions such as pain, fatigue and decreased bone density, models of lifespan care, and preventative care and wellness. Kevin Murphy, MD (PM&R) of Duluth and Gary Noritz, MD (Medicine-Pediatrics) of Cleveland were the panelists. Geourge Kourtsounis of Washington, DC, then gave a consumer's perspective to outline common barriers to care and strategies to help facilitate care. Finally, there was a discussion of areas of consensus on guidelines for quality care and needs for future research and guidelines for care.


George Kourtsounis and Deborah Thorpe	Laura Tosi answering questions

Panelists Kevin Murphy, Ronna Linroth, Garey Noritz, Laura Tosi, John Reiss, George Kourtsounis	Ronna Linroth holding up the DMCN supplement on adults with cerebral palsy

The following presentations about adults and/or adolescents related to life span care were featured at the 64th Annual Meeting of the AACPDM in Washington, D.C. September 22-25, 2010. Most of these abstracts have been published in Supplement s5, Vol. 52, September 2010 issue of Developmental Medicine Child Neurology:

Platform Presentations and Posters
WIDESPREAD PAIN IS CORRELATED WITH PHYSICAL AND NOT MENTAL COMPONENTS OF HEALTH-RELATED QUALITY OF LIFE IN ADULTS WITH SPASTIC UNILATERAL AND BILATERAL CEREBRAL PALSY
Arve Opheim, MSc; Reidun Jahnsen; Elisabeth Olsson; Johan K. Stanghelle

SEXUALITY OF YOUNG ADULTS WITH CEREBRAL PALSY: EXPERIENCED LIMITATIONS AND NEEDS
Diana Wiegerink, MSc; Peggy Cohen-Kettenis; Henk Stam; Marij Roebroeck

THE RELATIONSHIP OF SCHOOL-BASED THERAPY TO POSTSECONDARY EDUCATION IN YOUNG ADULTS WITH PHYSICAL OR ORTHOPEDIC LIMITATIONS: A LONGITUDINAL ANALYSIS
Ana Kobayashi, MPH; Kristie Bjornson, PhD PT; Chuan Zhou, PhD; William Walker, MD

PAID EMPLOYMENT IN YOUNG ADULTS WITH PHYSICAL LIMITATIONS: RELATIONSHIP TO SCHOOL-BASED THERAPY
Ana Kobayashi, MPH; Kristie Bjornson, PhD PT; Chuan Zhou, PhD; William Walker, MD

HIGH PREVALENCE AND CO-OCCURRENCE OF CHRONIC PAIN, FATIGUE AND DEPRESSIVE SYMPTOMS IN ADULTS WITH SPASTIC CEREBRAL PALSY
Wilma van der Slot, MD; Channah Nieuwenhuijsen; Rita van den Berg-Emons; Michael Bergen; Sander Hilberink; Henk Stam; Marij Roebroeck

A RANDOMIZED, DOUBLE-BLIND, PLACEBO-CONTROLLED STUDY ON THE EFFECTS OF BOTULINUM TOXIN A IN AMBULANT ADULTS WITH SPASTIC CEREBRAL PALSY
Grethe Maanum, MD; Reidun Jahnsen, PhD; Johan Stanghelle; Leiv Sandvik; Anne Keller, PhD

GENDER DIFFERENCES IN OUTCOMES OF ADULTS WITH PEDIATRIC-ONSET SPINAL CORD INJURY
Kathy Zebracki, PhD; Kathleen M. Chlan, BA; Lawrence C. Vogel, MD

GENDER DIFFERENCES IN OUTCOMES OF ADULTS WITH PEDIATRIC-ONSET SPINAL CORD INJURY
Kathy Zebracki, PhD; Kathleen M. Chlan, BA; Lawrence C. Vogel, MD

CHANGE IN ECONOMIC STATUS IN YOUNG AND MIDDLEAGED ADULTS WITH A PEDIATRIC-ONSET SPINAL CORD INJURY OVER A TEN-YEAR PERIOD
Kathy Zebracki, PhD; Lawrence C. Vogel, MD; Kathleen M. Chlan, BA

A SYSTEMATIC REVIEW OF THE CLINIMETRIC PROPERTIES OF MEASURES OF AEROBIC AND ANAEROBIC FITNESS IN ADOLESCENTS AND ADULTS WITH CEREBRAL PALSY
Nancy Lennon, MS PT; Deborah Thorpe; Annet Dallmeijer; Astrid Balemans; Maria Fragala-Pinkham; Margaret E. O’Neil, PhD MPH PT; Kristie Bjornson, PhD PT; Kelly Clanchy; Roslyn Boyd, PhD MSc

SELF CONCEPT, SATISFACTION WITH LIFE, ACTIVITY LEVEL, AND ENVIRONMENTAL BARRIERS OF YOUNG ADULTS WITH CEREBRAL PALSY
Mary Gannotti, PhD; Christin Minter, MA; Henry Chambers, MD; Peter Smith, MD; Chester Tylkowski, MD

THE ROLE OF PHYSICAL FITNESS AND ACTIVITY FOR FATIGUE, PARTICIPATION AND HEALTH-RELATED QUALITY OF LIFE IN AMBULATORY ADULTS WITH BILATERAL CEREBRAL PALSY
Rita Berg-Emons van den, PhD; Channah Nieuwenhuijsen; Wilma Slot van der; Annet Dallmeijer; Peter Janssens; Martinus Terburg; Michael Bergen; Henk Stam; Marij Roebroeck

ENERGY EXPENDITURE IN ADULTS WITH CEREBRAL PALSY PLAYING WII SPORTS: A CROSS-SECTIONAL STUDY
Rita J. Berg-Emons van den, PhD; Henri L. Hurkmans; Henk J. Stam, MD

SITE-SPECIFIC ALTERATION IN FEMORAL AND TIBIAL BONE DIMENSIONS IN INDEPENDENTLY AMBULANT ADOLESCENTS AND YOUNG ADULTS WITH SPASTIC CEREBRAL PALSY
Martin Gough, FRCSI(Orth); Nicola Fry, PhD; Mohammed Al- Sarawan, FRCS(Orth); Stephen Keevil, PhD; Adam Shortland, PhD

Demonstration Posters
DEVELOPMENT OF A MULTIDISCIPLANARY CLINIC FOR ADULTS WITH CHILDHOOD NEUROMUSCULAR DISEASE
Garey Noritz, MD; Irwin Jacobs, MD; Michael Infeld, MD; James Finley, MD; Robert Bahler, MD; David Birnkrant, MD; Mary Flood, PNP

SEXUALITY AND YOUNG ADULTS WITH CEREBRAL PALSY
Susan C. Labhard, MSN RN