Boston University / University of Michigan


Grant Number: 1U01AR057929-01
Project Title: PROS (Patient Reported Outcomes) for Children and Young Adults with Disabilities
PI Name, Title and Contact Information:
  1. Stephen Haley, PT, PhD, Principal Investigator Professor, Department of Rehabilitation Sciences, Sargent College of Health and Rehabilitation Sciences at Boston University; Associate Director, Health and Disability Research Institute, Boston University School of Public Health
  2. David Tulsky, PhD, Principal Investigator Director of Research, Department of Physical Medicine and Rehabilitation, University of Michigan, 325 E. Eisenhower Parkway, Suite 200, Ann Arbor, MI 48108
Other Key Personnel: Alan Jette, PT, MPH, PhD, Research Investigator
Pengsheng Ni, MD, MPH, Senior Data Analyst
Web Site:  

Abstract:

The notion that children's quality of life instruments need to be designed and applied in a manner specific to children’s developmental and cognitive needs is now widely accepted. It is somewhat unclear at what age a children’s designed instrument will suffice, and at what age adult PROs can be used with confidence. Specific research needs to focus directly on the content and format of quality of life assessments during the child-adolescent-young adult transition stages, particularly for children and young adults with disabilities. Thus, the theme for the Boston University (BU), Kessler Medical Rehabilitation Research & Education Center (KMRR) PROMIS Wave 2 research site proposal is PROs for Children and Young Adults with Disabilities. With this thematic focus, the BU/KMRR PROMIS Research site will evaluate current PROMIS child and adult item banks in a wide spectrum of childhood and young adult disabling conditions, and examine links between current child and adult PROMIS products. The BU/KMRR PROMIS Research site will develop a cohesive program of research that will span both childhood and young adult age groups. Our focus will be on children and young adults with disabilities, and how PRO quality of life assessments can be adapted to meet their needs.

  • Project # 1: We will examine the responsiveness of the current PROMIS item banks for children and young adults with cerebral palsy who receive major musculoskeletal surgeries.
  • Project #2: We will develop a scoring link between current PROMIS pediatric and adult item banks so that the PROMIS measures can be used longitudinally during this child-adult transition using a similar metric. Major childhood and adult conditions represented in the sampling plan include children and young adults with cerebral palsy, spinal cord injury and traumatic brain injury.
  • Project #3: We will evaluate how a sample of the PROMIS item banks work with young adults in relationship to items developed from complimentary projects such as NeuroQOL SCI–QOL, SCI–CAT, and TBI–QOL.

We will accomplish these goals by pursuing three specific aims:

AIM 1: Determine the responsiveness of pediatric PROMIS item bank products for children with cerebral palsy undergoing major musculoskeletal surgeries.

AIM 2: Develop a transitional scoring link between current pediatric and adult PROMIS item bank products by administering both pediatric and adult items to children and young adults.

AIM 3: Evaluate the applicability of PROMIS short forms for use in individuals with TBI and SCI and determine if inclusion of supplemental targeted items can improve the sensitivity and specificity of the PROMIS for individuals with TBI and SCI.

Patient Populations:

Children and young adults with cerebral palsy, spinal cord injury, and traumatic brain injury.

For questions concerning Boston University’s role in the PROMIS network, please contact Stephen Haley PhD, at smhaley@bu.edu or David Tulsky, PhD, by e-mail at dtulsky@med.umich.edu. For more information about the PROMIS network, go to http://www.nihpromis.org.