This proposed Patient-Reported Outcomes Measurement Information System (PROMIS) Statistical Center (PSC) will advise and educate members of the network on a range of qualitative research methods;develop and implement processes to ensure data quality;provide leadership in the development of PROMIS approved translations of new and extant domains;assist in the development and implementation of protocols, provide consultation on research design, sample size, sampling plans and power estimates for item bank testing;and provide psychometric and statistical support for the network. The PSC will serve as the repository for all data collected across the PROMIS network, enabling central quality assurance of data and analysis integrity. PSC investigators will provide leadership and expertise in mixed quantitative and qualitative methods approaches to develop, test and refine PROMIS items banks and assessment tools. The PSC will also participate with the PROMIS Network Steering Committee (PNSC) to prioritize the science and other decisions to be made regarding PROMIS measurement science and tools to support its widespread use. Our PSC investigators are international leaders in the development and evaluation of PRO Instruments and item banks, the design, implementation and coordination of clinical and survey research studies;and the development and application of psychometric, statistical and qualitative methods for analysis of self-report data, and cross-cultural PRO development and evaluation, including multi-lingual translations. Also, our own work in developing PROs and developing and using various forms of technology for their administration affords us valuable experience in collaborating with informatics experts, such as the PTC, to advance the use of these tools in research and practice. Given our nearly 5-year history as Statistical Coordinating Center for the PROMIS network, we are uniquely positioned to continue In a leadership role of PROMIS activities, advancing the science behind building and applying valid and clinically useful item banks. Application investigators have 4-years of collaborative experience on PROMIS and even more on related research. Our application offers the combination of the scientific and collaborative experience of our psychometric, statistical and qualitative investigators;our proven capabilities in data and project coordination and management;and our track record of network leadership and interdisciplinary and inter-Institutional collaboration. Through 3 functional cores and an admin unit, we will solicit, coordinate and activate Input from the PNSC, PTC, PNC and the PRS investigators to ensure the success of the PROMIS initiative.

Public Health Relevance

The Patient-Reported Outcomes Measurement Information System (PROMIS) aims to develop scientifically sound, efficient ways to obtain information about symptoms and health status from patients with a range of chronic illnesses. The proposed PROMIS Statistical Center (PSC) will support this endeavor by providing expertise in instrument development, qualitative research, data management, psychometric analysis, statistical analysis, and linguistic translation of new PROMIS measures.

Agency
National Institute of Health (NIH)
Institute
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)
Type
Specialized Center--Cooperative Agreements (U54)
Project #
3U54AR057951-03S1
Application #
8466258
Study Section
Special Emphasis Panel (ZRG1-RPHB-A (53))
Program Officer
Serrate-Sztein, Susana
Project Start
2009-09-30
Project End
2013-07-31
Budget Start
2012-07-10
Budget End
2012-07-31
Support Year
3
Fiscal Year
2012
Total Cost
$69,466
Indirect Cost
$24,504
Name
Northwestern University at Chicago
Department
Public Health & Prev Medicine
Type
Schools of Medicine
DUNS #
005436803
City
Chicago
State
IL
Country
United States
Zip Code
60611
Cella, David; Lai, Jin-Shei; Jensen, Sally E et al. (2016) PROMIS Fatigue Item Bank had Clinical Validity across Diverse Chronic Conditions. J Clin Epidemiol 73:128-34
Cook, Karon F; Jensen, Sally E; Schalet, Benjamin D et al. (2016) PROMIS measures of pain, fatigue, negative affect, physical function, and social function demonstrated clinical validity across a range of chronic conditions. J Clin Epidemiol 73:89-102
Hays, Ron D; Revicki, Dennis A; Feeny, David et al. (2016) Using Linear Equating to Map PROMIS(®) Global Health Items and the PROMIS-29 V2.0 Profile Measure to the Health Utilities Index Mark 3. Pharmacoeconomics 34:1015-22
Munoz, Alexis R; Kaiser, Karen; Yanez, Betina et al. (2016) Cancer experiences and health-related quality of life among racial and ethnic minority survivors of young adult cancer: a mixed methods study. Support Care Cancer 24:4861-4870
Hahn, Elizabeth A; Beaumont, Jennifer L; Pilkonis, Paul A et al. (2016) The PROMIS satisfaction with social participation measures demonstrated responsiveness in diverse clinical populations. J Clin Epidemiol 73:135-41
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
Penedo, Frank J; Cella, David (2016) Responding to the quality imperative to embed mental health care into ambulatory oncology. Cancer :
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

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