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Children’s Hospital of Philadelphia

Grant Number:	1U01AR057956-01
Project Title:	Pediatric PROMIS: Advancing the Measurement and Conceptualization of Child Health
PI Name, Title and Contact Information:	Christopher B. Forrest, MD, PhD, Principal Investigator, Professor of Pediatrics, Children’s Hospital of Philadelphia
Other Key Personnel:	Physical Activity Carole Tucker, PhD, Lead Heather Bowles, PhD Christopher B. Forrest, MD, PhD Ashley Wilder Smith, PhD Experiences of Stress William Gardner, PhD, Co-Lead Katherine Bevans, PhD, Co-Lead Mary Jo Kupst, PhD Laura M. Mackner, PhD Kathleen Pajer, MD Family Belonging Anne Riley, PhD, Lead Barbara Fiese, PhD Jeanne M. Landgraf, MA Lisa J. Meltzer, PhD Subjective Well-Being Ulrike Ravens-Seiberer, PhD, Co-Lead Michael Erhart, PhD, Co-Lead Christopher B. Forrest, MD, PhD John Salsman, PhD Learning and School Engagement Stephanie Peabody, PsyD Nancee Tracy, EdM Leslie Williamson Gretchen Kuntz, MSW, MSLIS, Biomedical Librarian Susan Magasi, PhD, Qualitative Expert JeanHee Moon, PhD, Program Manager
Web Site:	www.chop.edu

Abstract:

Health comprises resources necessary for resisting illness, adapting to demands and disease, and flourishing. For children, health is the foundation for engaging in increasingly challenging activities that stimulate physical, cognitive, and social development.

The goal of the proposed project is to develop novel measures of children's perceived health—child and parent respondent editions–that are based in a comprehensive, consensus–derived, developmentally informed, child–sensitive model of health. We will accomplish this goal by pursuing four specific aims:

AIM 1: Conceptualize and integrate within the existing PROMIS framework the novel pediatric perceived health constructs of physical activity, experiences of stress, family belonging, and subjective well-being.

AIM 2: Develop pediatric item pools for these health constructs.

AIM 3: Calibrate, validate, and developmentally equate the item pools among 5,000 parent/child dyads.

AIM 4: Perform a clinical validation study of PROMIS item banks among 300 children with inflammatory bowel disease (IBD).

We will use literature reviews, secondary data analyses, semi-structured interviews, and an international/cross-cultural consensus development process to expand the PROMIS conceptual framework to ensure it is sensitive to the unique characteristics of children. Data will be collected at the nation's largest pediatric integrated delivery system and several school systems. A key innovation is our focus on children’s development, a sensitivity that will imbue the conceptualization of child health, qualitative approaches to item pool development, and statistical methods for analyzing developmental change.

Data Collection Sites:

A: Schools

We are aggressively developing formalized relationships with several school districts
- Four school districts and one independent school in NH and VT (with our Center for School Success collaborators)
- Arlington Independent School District, TX
- Simon Youth Foundation

B. Children’s Hospital of Philadelphia; the largest pediatric integrated delivery system in the nation

Primary care clinics/research network
Emergency department
Sub-specialty clinics; practices that have already agreed to participate in this project include:
- Rheumatology
- Oncology
- Gastroenterology
- Pulmonary
- Pain
- Sleep disorders
- Cardiology
- Behavioral health
- Autism

C. Inflammatory Bowel Disease

We will perform a clinical validation of pediatric PROMIS scales with 300 patients and their parents with IBD.

Key Assets That We Bring to PROMIS II:

Our focus on children and families, and a life course perspective on health;
A focus on conceptualizing health to be consistent with the PROMIS framework, while achieving a consensus in the field on what health means and how it differs from related concepts;
A robust data collection infrastructure that includes schools, primary care practices, Emergency Department, and sub-specialty clinics. We look forward to finding ways to leverage these resources in collaboration with other members of the network;
A statistical and psychometric infrastructure that augments the statistical coordinating center of the network; and
Translation of item banks into a universal Spanish and universal German version. We have also formed a European group of consultants and advisors who will be working to promote PROMIS in the EU.

For questions concerning Children’s Hospital of Philadelphia’s role in the PROMIS network, please contact Christopher Forrest, MD, PhD, by e-mail at forrestc@email.chop.edu. For more information about the PROMIS network, go to http://www.nihpromis.org.