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.

Agency
National Institute of Health (NIH)
Institute
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Type
Research Project--Cooperative Agreements (U01)
Project #
3U01AR052181-09S1
Application #
8705695
Study Section
Special Emphasis Panel (ZRG1-RPHB-A (54))
Program Officer
Serrate-Sztein, Susana
Project Start
2009-09-30
Project End
2014-07-31
Budget Start
2012-08-01
Budget End
2014-07-31
Support Year
9
Fiscal Year
2013
Total Cost
$200,000
Indirect Cost
$60,961
Name
University of North Carolina Chapel Hill
Department
Internal Medicine/Medicine
Type
Schools of Medicine
DUNS #
608195277
City
Chapel Hill
State
NC
Country
United States
Zip Code
27599
Irwin, Debra E; Atwood Jr, Charles A; Hays, Ron D et al. (2015) Correlation of PROMIS scales and clinical measures among chronic obstructive pulmonary disease patients with and without exacerbations. Qual Life Res 24:999-1009
Varni, James W; Thissen, David; Stucky, Brian D et al. (2014) PROMISýý Parent Proxy Report Scales for children ages 5-7 years: an item response theory analysis of differential item functioning across age groups. Qual Life Res 23:349-61
Pilkonis, Paul A; Yu, Lan; Dodds, Nathan E et al. (2014) Validation of the depression item bank from the Patient-Reported Outcomes Measurement Information System (PROMIS) in a three-month observational study. J Psychiatr Res 56:112-9
Selewski, David T; Massengill, Susan F; Troost, Jonathan P et al. (2014) Gaining the Patient Reported Outcomes Measurement Information System (PROMIS) perspective in chronic kidney disease: a Midwest Pediatric Nephrology Consortium study. Pediatr Nephrol 29:2347-56
Bjorner, Jakob B; Rose, Matthias; Gandek, Barbara et al. (2014) Difference in method of administration did not significantly impact item response: an IRT-based analysis from the Patient-Reported Outcomes Measurement Information System (PROMIS) initiative. Qual Life Res 23:217-27
Tucker, Carole A; Bevans, Katherine B; Teneralli, Rachel E et al. (2014) Self-reported pediatric measures of physical activity, sedentary behavior, and strength impact for PROMIS: conceptual framework. Pediatr Phys Ther 26:376-84
Fries, James F; Lingala, Bharathi; Siemons, Liseth et al. (2014) Extending the floor and the ceiling for assessment of physical function. Arthritis Rheumatol 66:1378-87
Junghaenel, Doerte U; Schneider, Stefan; Stone, Arthur A et al. (2014) Ecological validity and clinical utility of Patient-Reported Outcomes Measurement Information System (PROMIS®) instruments for detecting premenstrual symptoms of depression, anger, and fatigue. J Psychosom Res 76:300-6
Varni, James W; Magnus, Brooke; Stucky, Brian D et al. (2014) Psychometric properties of the PROMIS ýý pediatric scales: precision, stability, and comparison of different scoring and administration options. Qual Life Res 23:1233-43
Rose, Matthias; Bjorner, Jakob B; Gandek, Barbara et al. (2014) The PROMIS Physical Function item bank was calibrated to a standardized metric and shown to improve measurement efficiency. J Clin Epidemiol 67:516-26

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