The National Person-Centered Assessment Resource (PCAR) Principal Investigator: David Cella, PhD with its five subcontract sites, Northwestern University (NU) proposes to refine and sustain a Research Resource infrastructure that will educate and enable researchers and other interested health professionals on the use and interpretation of person-centered health outcomes. Person-centered health outcomes are those that are reported or performed by an individual research participant or patient, and that have importance to the quality of life of that participant. We refer to this resource as The National Person-Centered Assessment Resource, or PCAR. Specifically, PCAR will support the use and enhancement of four measurement information systems, currently funded as separate NIH programs: The Patient Reported Outcomes Measurement Information System(R) (PROMIS(R)); The NIH Toolbox for Assessment of Neurological and Behavioral Function (NIH Toolbox); The Neurology Quality of Life Measurement System (Neuro-QoL); and The Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me). Across our six performance sites (Northwestern University, University of California at Los Angeles, University of California at San Diego; University of North Carolina, University of Pittsburgh, and American Institutes of Research), we possess all of the necessary capabilities to perform the tasks designated in RFA CA-13-008. These capabilities include psychometrics, survey research, biostatistics, population statistics, software design and maintenance, electronic data capture and secure storage, technical support, health information technology integration, educational methods, website design, dissemination and implementation methods, marketing and communication, and business development. PCAR will provide an integrated platform for automated use of these four measurement information systems. The PCAR platform is already compatible with various modes of information collection (including web/mobile-based entry, non-digital paper source data, and others). During the funded period, we will move to sustain this platform and the educational and statistical services around them, under a fee-for-service model that will support free and open distribution of static, downloadable measures as well as administration, scoring, and interpretation tools. PCAR will also be designed to allow resource users (i.e., external researchers and clinicians unaffiliated with the resource) to access and use any of the four systems together or in isolation and tailor use to meet the specific study needs, while capturing and transmitting participant data securely. This expansive National PCAR vision will be realized by surrounding a sustainable Research Resource, located at NU and already operational (with annual ex-NIH PCAR revenues approaching $1,000,000), with core supporting expertise in statistics, outreach, and administration, including project management and business development.

Public Health Relevance

The National Institutes of Health (NIH) has played a major role in advancing our ability to measure and report health and health care outcomes that are important to the everyday lives of people of all ages. We refer to these outcomes as 'person-centered outcomes.' Four NIH-sponsored initiatives in this area have recently concluded, and are now ready for widespread use. This project will bring all four of these person- centered outcome measures together and then educate, equip and enable researchers and clinical providers to use them correctly and effectively. We refer to this as the National Person-Centered Assessment Resource, or PCAR. PCAR will be based at Northwestern University, and staffed by personnel at NU with five other collaborating sites around the country. PCAR will enable users to access and deploy any or all of the four systems through a Research Resource that includes a single web-based Assessment CenterSM. This national resource will be supported by three specialized groups: A Statistical Core to ensure that the measures meet the highest measurement standards; An Outreach Core to support users through education and dissemination of measure selection, administration, and interpretation guidelines; and an Administrative Core to create and implement a plan to sustain PCAR after NIH funding ends.

Agency
National Institute of Health (NIH)
Institute
National Cancer Institute (NCI)
Type
Resource-Related Research Multi-Component Projects and Centers Cooperative Agreements (U2C)
Project #
5U2CCA186878-03
Application #
9136083
Study Section
Special Emphasis Panel (ZCA1-GRB-I (J2))
Program Officer
Tuovinen, Priyanga
Project Start
2014-09-01
Project End
2018-08-31
Budget Start
2016-09-01
Budget End
2017-08-31
Support Year
3
Fiscal Year
2016
Total Cost
$2,203,902
Indirect Cost
$770,577
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
Kaat, Aaron J; Schalet, Benjamin D; Rutsohn, Joshua et al. (2018) Physical function metric over measure: An illustration with the Patient-Reported Outcomes Measurement Information System (PROMIS) and the Functional Assessment of Cancer Therapy (FACT). Cancer 124:153-160
Hays, Ron D; Calderón, José Luis; Spritzer, Karen L et al. (2018) Differential item functioning by language on the PROMIS® physical functioning items for children and adolescents. Qual Life Res 27:235-247
Paolillo, Emily W; McKenna, Benjamin S; Nowinski, Cindy J et al. (2018) NIH Toolbox® Emotion Batteries for Children: Factor-Based Composites and Norms. Assessment :1073191118766396
Estabrook, Ryne; Cella, David; Zhao, Fengmin et al. (2018) Longitudinal and dynamic measurement invariance of the FACIT-Fatigue scale: an application of the measurement model of derivatives to ECOG-ACRIN study E2805. Qual Life Res 27:1589-1597
Hays, Ron D; Spritzer, Karen L; Schalet, Benjamin D et al. (2018) PROMIS®-29 v2.0 profile physical and mental health summary scores. Qual Life Res 27:1885-1891
Reeve, Bryce B; Edwards, Lloyd J; Jaeger, Byron C et al. (2018) Assessing responsiveness over time of the PROMIS® pediatric symptom and function measures in cancer, nephrotic syndrome, and sickle cell disease. Qual Life Res 27:249-257
Paulino Pereira, Nuno Rui; Janssen, Stein J; Raskin, Kevin A et al. (2017) Most efficient questionnaires to measure quality of life, physical function, and pain in patients with metastatic spine disease: a cross-sectional prospective survey study. Spine J 17:953-961
Cook, Karon F; Kallen, Michael A; Coon, Cheryl D et al. (2017) Idio Scale Judgment: evaluation of a new method for estimating responder thresholds. Qual Life Res 26:2961-2971
Dean, Daniel M; Ho, Bryant S; Lin, Albert et al. (2017) Predictors of Patient-Reported Function and Pain Outcomes in Operative Ankle Fractures. Foot Ankle Int 38:496-501
Howland, Molly; Tatsuoka, Curtis; Smyth, Kathleen A et al. (2017) Evaluating PROMIS(®) applied cognition items in a sample of older adults at risk for cognitive decline. Psychiatry Res 247:39-42

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