The overall objectives of this project are to validate the PROM IS pediatric item banks in 4 pediatric chronic illnesses, and to link pediatric and adult item banks. We developed 9 pediatric item banks during the first PROMIS grant cycle and have performed cross-sectional testing in children with several chronic illnesses. The proposed work is the natural next step toward integration of PROMIS scales into clinical research. We propose longitudinal studies in children with asthma, cancer, nephrotic syndrome, and sickle cell disease. Each study follows children through a clinical transition known to affect health-related quality of life, and each study will examine the responsiveness of the PROMIS instruments and estimate the minimum important difference (MID) for children. As part of these studies, we have proposed to test a new method for establishing MID and to compare that method with traditional distributional and anchor-based methods. The second overall objective is to link PROMIS pediatric item banks with PROMIS adult item banks. We designed most of the pediatric banks to measure the same underlying trait as their counterpart adult banks (e.g., fatigue), but used the concepts and language of children. We will administer pediatric and adult short forms to adolescents with chronic illnesses with a cross-sectional data collection. For this objective, we will use factor analysis and structural equation modeling to establish the empirical relationships between the pediatric and adult item banks and domains, and, to the extent supported by those relationships, use item response theory to link the pediatric and adult item banks. This study will enable researchers to have comparable scores between children and adults participating in the same study and enable longitudinal studies that follow children into adulthood.

Public Health Relevance

Performing longitudinal validity studies in 4 chronic illnesses will prepare PROMIS for use in future clinical research. By linking the pediatric and adult item banks, we will accelerate research on diseases that affect both children and adults and enable researchers to study trajectory of health-related quality of life from childhood to adulthood.

National Institute of Health (NIH)
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Research Project--Cooperative Agreements (U01)
Project #
Application #
Study Section
Special Emphasis Panel (ZRG1-RPHB-A (54))
Program Officer
Serrate-Sztein, Susana
Project Start
Project End
Budget Start
Budget End
Support Year
Fiscal Year
Total Cost
Indirect Cost
University of North Carolina Chapel Hill
Internal Medicine/Medicine
Schools of Medicine
Chapel Hill
United States
Zip Code
Howell, Carrie R; Thompson, Lindsay A; Gross, Heather E et al. (2016) Responsiveness to Change in PROMIS(®) Measures among Children with Asthma: A Report from the PROMIS(®) Pediatric Asthma Study. Value Health 19:192-201
Kashikar-Zuck, Susmita; Carle, Adam; Barnett, Kimberly et al. (2016) Longitudinal evaluation of patient-reported outcomes measurement information systems measures in pediatric chronic pain. Pain 157:339-47
Dampier, Carlton; Barry, Vaughn; Gross, Heather E et al. (2016) Initial Evaluation of the Pediatric PROMIS® Health Domains in Children and Adolescents With Sickle Cell Disease. Pediatr Blood Cancer 63:1031-7
Schalet, Benjamin D; Pilkonis, Paul A; Yu, Lan et al. (2016) Clinical validity of PROMIS Depression, Anxiety, and Anger across diverse clinical samples. J Clin Epidemiol 73:119-27
Li, Zheng; Thompson, Lindsay A; Gross, Heather E et al. (2016) Longitudinal associations among asthma control, sleep problems, and health-related quality of life in children with asthma: a report from the PROMIS(®) Pediatric Asthma Study. Sleep Med 20:41-50
Thissen, David; Liu, Yang; Magnus, Brooke et al. (2016) Estimating minimally important difference (MID) in PROMIS pediatric measures using the scale-judgment method. Qual Life Res 25:13-23
Stukenborg, George J; Blackhall, Leslie J; Harrison, James H et al. (2016) Longitudinal patterns of cancer patient reported outcomes in end of life care predict survival. Support Care Cancer 24:2217-24
Brandon, Timothy G; Becker, Brandon D; Bevans, Katherine B et al. (2016) Patient Reported Outcomes Measurement Information System® (PROMIS(®) ) Tools for Collecting Patient-Reported Outcomes in Children with Juvenile Arthritis. Arthritis Care Res (Hoboken) :
Dampier, Carlton; Jaeger, Byron; Gross, Heather E et al. (2016) Responsiveness of PROMIS® Pediatric Measures to Hospitalizations for Sickle Pain and Subsequent Recovery. Pediatr Blood Cancer 63:1038-45
Magnus, Brooke E; Liu, Yang; He, Jason et al. (2016) Mode effects between computer self-administration and telephone interviewer-administration of the PROMIS(®) pediatric measures, self- and proxy report. Qual Life Res 25:1655-65

Showing the most recent 10 out of 101 publications