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Grant Details

Grant Number: 5U2CCA186878-04 Interpret this number
Primary Investigator: Cella, David
Organization: Northwestern University At Chicago
Project Title: The National Person-Centered Assessment Resource (PCAR)
Fiscal Year: 2017
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Abstract

DESCRIPTION (provided by applicant): 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.

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Publications

Patient-Reported Outcomes Measurement Information System (PROMIS) Use in Surgical Care: A Scoping Study.
Authors: Jones R.S. , Stukenborg G.J. .
Source: Journal Of The American College Of Surgeons, 2017 Mar; 224(3), p. 245-254.e1.
EPub date: 2016-12-10 00:00:00.0.
PMID: 27965131
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Infertile women who screen positive for depression are less likely to initiate fertility treatments.
Authors: Crawford N.M. , Hoff H.S. , Mersereau J.E. .
Source: Human Reproduction (oxford, England), 2017-03-01 00:00:00.0; 32(3), p. 582-587.
PMID: 28073974
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A Health-Related Quality-of-Life Measure for Use in Patients with HIV: A Validation Study.
Authors: Schnall R. , Liu J. , Cho H. , Hirshfield S. , Siegel K. , Olender S. .
Source: Aids Patient Care And Stds, 2017 Feb; 31(2), p. 43-48.
EPub date: 2017-01-04 00:00:00.0.
PMID: 28051875
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Evaluating PROMIS(®) applied cognition items in a sample of older adults at risk for cognitive decline.
Authors: Howland M. , Tatsuoka C. , Smyth K.A. , Sajatovic M. .
Source: Psychiatry Research, 2017 Jan; 247, p. 39-42.
EPub date: 2016-11-01 00:00:00.0.
PMID: 27863317
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Receipt Of Caregiving And Fall Risk In Us Community-dwelling Older Adults
Authors: Hoffman G.J. , Hays R.D. , Wallace S.P. , Shapiro M.F. , Yakusheva O. , Ettner S.L. .
Source: Medical Care, 2016-11-21 00:00:00.0; , .
PMID: 27875481
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Is The Bifactor Model A Better Model Or Is It Just Better At Modeling Implausible Responses? Application Of Iteratively Reweighted Least Squares To The Rosenberg Self-esteem Scale
Authors: Reise S.P. , Kim D.S. , Mansolf M. , Widaman K.F. .
Source: Multivariate Behavioral Research, 2016 Nov-Dec; 51(6), p. 818-838.
PMID: 27834509
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Using Linear Equating to Map PROMIS(®) Global Health Items and the PROMIS-29 V2.0 Profile Measure to the Health Utilities Index Mark 3.
Authors: Hays R.D. , Revicki D.A. , Feeny D. , Fayers P. , Spritzer K.L. , Cella D. .
Source: Pharmacoeconomics, 2016 Oct; 34(10), p. 1015-22.
PMID: 27116613
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The Costs of Fall-Related Injuries among Older Adults: Annual Per-Faller, Service Component, and Patient Out-of-Pocket Costs.
Authors: Hoffman G.J. , Hays R.D. , Shapiro M.F. , Wallace S.P. , Ettner S.L. .
Source: Health Services Research, 2016-09-01 00:00:00.0; , .
EPub date: 2016-09-01 00:00:00.0.
PMID: 27581952
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Claims-based Identification Methods and the Cost of Fall-related Injuries Among US Older Adults.
Authors: Hoffman G.J. , Hays R.D. , Shapiro M.F. , Wallace S.P. , Ettner S.L. .
Source: Medical Care, 2016 Jul; 54(7), p. 664-71.
PMID: 27057747
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A PROMIS Measure of Neuropathic Pain Quality.
Authors: Askew R.L. , Cook K.F. , Keefe F.J. , Nowinski C.J. , Cella D. , Revicki D.A. , Morgan DeWitt E.M. , Michaud K. , Trence D.L. , Amtmann D. .
Source: Value In Health : The Journal Of The International Society For Pharmacoeconomics And Outcomes Research, 2016 Jul-Aug; 19(5), p. 623-30.
PMID: 27565279
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Validating Neuro-QoL short forms and targeted scales with people who have multiple sclerosis.
Authors: Miller D.M. , Bethoux F. , Victorson D. , Nowinski C.J. , Buono S. , Lai J.S. , Wortman K. , Burns J.L. , Moy C. , Cella D. .
Source: Multiple Sclerosis (houndmills, Basingstoke, England), 2016 May; 22(6), p. 830-41.
PMID: 26238464
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The PROMIS satisfaction with social participation measures demonstrated responsiveness in diverse clinical populations.
Authors: Hahn E.A. , Beaumont J.L. , Pilkonis P.A. , Garcia S.F. , Magasi S. , DeWalt D.A. , Cella D. .
Source: Journal Of Clinical Epidemiology, 2016 May; 73, p. 135-41.
PMID: 26931288
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Clinical validity of PROMIS Depression, Anxiety, and Anger across diverse clinical samples.
Authors: Schalet B.D. , Pilkonis P.A. , Yu L. , Dodds N. , Johnston K.L. , Yount S. , Riley W. , Cella D. .
Source: Journal Of Clinical Epidemiology, 2016 May; 73, p. 119-27.
PMID: 26931289
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PROMIS Fatigue Item Bank had Clinical Validity across Diverse Chronic Conditions.
Authors: Cella D. , Lai J.S. , Jensen S.E. , Christodoulou C. , Junghaenel D.U. , Reeve B.B. , Stone A.A. .
Source: Journal Of Clinical Epidemiology, 2016 May; 73, p. 128-34.
PMID: 26939927
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Evaluating Individual Change With the Quality of Life in Neurological Disorders (Neuro-QoL) Short Forms.
Authors: Kozlowski A.J. , Cella D. , Nitsch K.P. , Heinemann A.W. .
Source: Archives Of Physical Medicine And Rehabilitation, 2016 Apr; 97(4), p. 650-4.e8.
PMID: 26740062
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Dutch-Flemish translation of nine pediatric item banks from the Patient-Reported Outcomes Measurement Information System (PROMIS)®.
Authors: Haverman L. , Grootenhuis M.A. , Raat H. , van Rossum M.A. , van Dulmen-den Broeder E. , Hoppenbrouwers K. , Correia H. , Cella D. , Roorda L.D. , Terwee C.B. .
Source: Quality Of Life Research : An International Journal Of Quality Of Life Aspects Of Treatment, Care And Rehabilitation, 2016 Mar; 25(3), p. 761-5.
PMID: 25820548
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Demographically Corrected Normative Standards for the Spanish Language Version of the NIH Toolbox Cognition Battery.
Authors: Casaletto K.B. , Umlauf A. , Marquine M. , Beaumont J.L. , Mungas D. , Gershon R. , Slotkin J. , Akshoomoff N. , Heaton R.K. .
Source: Journal Of The International Neuropsychological Society : Jins, 2016 Mar; 22(3), p. 364-74.
EPub date: 2016-01-28 00:00:00.0.
PMID: 26817924
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Best (but oft-forgotten) practices: expressing and interpreting associations and effect sizes in clinical outcome assessments.
Authors: McLeod L.D. , Cappelleri J.C. , Hays R.D. .
Source: The American Journal Of Clinical Nutrition, 2016 Mar; 103(3), p. 685-93.
PMID: 26864358
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Performance of the Medicare Consumer Assessment of Health Care Providers and Systems (CAHPS) Physical Functioning Items.
Authors: Hays R.D. , Mallett J.S. , Gaillot S. , Elliott M.N. .
Source: Medical Care, 2016 Feb; 54(2), p. 205-9.
PMID: 26683780
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TBI-QOL: Development and Calibration of Item Banks to Measure Patient Reported Outcomes Following Traumatic Brain Injury.
Authors: Tulsky D.S. , Kisala P.A. , Victorson D. , Carlozzi N. , Bushnik T. , Sherer M. , Choi S.W. , Heinemann A.W. , Chiaravalloti N. , Sander A.M. , et al. .
Source: The Journal Of Head Trauma Rehabilitation, 2016 Jan-Feb; 31(1), p. 40-51.
PMID: 25931184
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The impact of events scale: a comparison of frequency versus severity approaches to measuring cancer-specific distress.
Authors: Salsman J.M. , Schalet B.D. , Andrykowski M.A. , Cella D. .
Source: Psycho-oncology, 2015 Dec; 24(12), p. 1738-45.
PMID: 25773193
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Agreement Between Responses From Community-Dwelling Persons With Stroke and Their Proxies on the NIH Neurological Quality of Life (Neuro-QoL) Short Forms.
Authors: Kozlowski A.J. , Singh R. , Victorson D. , Miskovic A. , Lai J.S. , Harvey R.L. , Cella D. , Heinemann A.W. .
Source: Archives Of Physical Medicine And Rehabilitation, 2015 Nov; 96(11), p. 1986-92.e14.
PMID: 26209471
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U.S. General Population Estimate for "Excellent" to "Poor" Self-Rated Health Item.
Authors: Hays R.D. , Spritzer K.L. , Thompson W.W. , Cella D. .
Source: Journal Of General Internal Medicine, 2015 Oct; 30(10), p. 1511-6.
PMID: 25832617
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Establishing a common metric for self-reported pain: linking BPI Pain Interference and SF-36 Bodily Pain Subscale scores to the PROMIS Pain Interference metric.
Authors: Cook K.F. , Schalet B.D. , Kallen M.A. , Rutsohn J.P. , Cella D. .
Source: Quality Of Life Research : An International Journal Of Quality Of Life Aspects Of Treatment, Care And Rehabilitation, 2015 Oct; 24(10), p. 2305-18.
PMID: 25894063
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Use of Internet panels to conduct surveys.
Authors: Hays R.D. , Liu H. , Kapteyn A. .
Source: Behavior Research Methods, 2015 Sep; 47(3), p. 685-90.
PMID: 26170052
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The PROMIS of QALYs.
Authors: Hanmer J. , Feeny D. , Fischhoff B. , Hays R.D. , Hess R. , Pilkonis P.A. , Revicki D.A. , Roberts M.S. , Tsevat J. , Yu L. .
Source: Health And Quality Of Life Outcomes, 2015-08-11 00:00:00.0; 13, p. 122.
EPub date: 2015-08-11 00:00:00.0.
PMID: 26260491
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Development and psychometric evaluation of a health-related quality of life instrument for individuals with adult-onset hearing loss.
Authors: Stika C.J. , Hays R.D. .
Source: International Journal Of Audiology, 2015 Jul; 55(7), p. 381-91.
PMID: 27104754
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Validation of the Neuro-QoL measurement system in children with epilepsy.
Authors: Lai J.S. , Nowinski C.J. , Zelko F. , Wortman K. , Burns J. , Nordli D.R. , Cella D. .
Source: Epilepsy & Behavior : E&b, 2015 May; 46, p. 209-14.
PMID: 25862469
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Demographically Corrected Normative Standards for the English Version of the NIH Toolbox Cognition Battery.
Authors: Casaletto K.B. , Umlauf A. , Beaumont J. , Gershon R. , Slotkin J. , Akshoomoff N. , Heaton R.K. .
Source: Journal Of The International Neuropsychological Society : Jins, 2015 May; 21(5), p. 378-91.
EPub date: 2015-06-01 00:00:00.0.
PMID: 26030001
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Bringing PROMIS to practice: brief and precise symptom screening in ambulatory cancer care.
Authors: Wagner L.I. , Schink J. , Bass M. , Patel S. , Diaz M.V. , Rothrock N. , Pearman T. , Gershon R. , Penedo F.J. , Rosen S. , et al. .
Source: Cancer, 2015-03-15 00:00:00.0; 121(6), p. 927-34.
EPub date: 2015-03-15 00:00:00.0.
PMID: 25376427
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The role of technical advances in the adoption and integration of patient-reported outcomes in clinical care.
Authors: Jensen R.E. , Rothrock N.E. , DeWitt E.M. , Spiegel B. , Tucker C.A. , Crane H.M. , Forrest C.B. , Patrick D.L. , Fredericksen R. , Shulman L.M. , et al. .
Source: Medical Care, 2015 Feb; 53(2), p. 153-9.
PMID: 25588135
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Responsiveness and minimally important difference for the patient-reported outcomes measurement information system (PROMIS) 20-item physical functioning short form in a prospective observational study of rheumatoid arthritis.
Authors: Hays R.D. , Spritzer K.L. , Fries J.F. , Krishnan E. .
Source: Annals Of The Rheumatic Diseases, 2015 Jan; 74(1), p. 104-7.
PMID: 24095937
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Assessment of stress and self-efficacy for the NIH Toolbox for Neurological and Behavioral Function.
Authors: Kupst M.J. , Butt Z. , Stoney C.M. , Griffith J.W. , Salsman J.M. , Folkman S. , Cella D. .
Source: Anxiety, Stress, And Coping, 2015; 28(5), p. 531-44.
PMID: 25577948
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Setting standards for severity of common symptoms in oncology using the PROMIS item banks and expert judgment.
Authors: Cella D. , Choi S. , Garcia S. , Cook K.F. , Rosenbloom S. , Lai J.S. , Tatum D.S. , Gershon R. .
Source: Quality Of Life Research : An International Journal Of Quality Of Life Aspects Of Treatment, Care And Rehabilitation, 2014 Dec; 23(10), p. 2651-61.
PMID: 24938431
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US valuation of health outcomes measured using the PROMIS-29.
Authors: Craig B.M. , Reeve B.B. , Brown P.M. , Cella D. , Hays R.D. , Lipscomb J. , Simon Pickard A. , Revicki D.A. .
Source: Value In Health : The Journal Of The International Society For Pharmacoeconomics And Outcomes Research, 2014 Dec; 17(8), p. 846-53.
PMID: 25498780
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Linking fatigue measures on a common reporting metric.
Authors: Lai J.S. , Cella D. , Yanez B. , Stone A. .
Source: Journal Of Pain And Symptom Management, 2014 Oct; 48(4), p. 639-48.
PMID: 24698661
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Self-reported cognitive concerns and abilities: two sides of one coin?
Authors: Lai J.S. , Wagner L.I. , Jacobsen P.B. , Cella D. .
Source: Psycho-oncology, 2014 Oct; 23(10), p. 1133-41.
PMID: 24700645
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Patient-Reported Outcomes Measurement Information System (PROMIS): efficient, standardized tools to measure self-reported health and quality of life.
Authors: Bevans M. , Ross A. , Cella D. .
Source: Nursing Outlook, 2014 Sep-Oct; 62(5), p. 339-45.
PMID: 25015409
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Validity of the Neurology Quality-of-Life (Neuro-QoL) measurement system in adult epilepsy.
Authors: Victorson D. , Cavazos J.E. , Holmes G.L. , Reder A.T. , Wojna V. , Nowinski C. , Miller D. , Buono S. , Mueller A. , Moy C. , et al. .
Source: Epilepsy & Behavior : E&b, 2014 Feb; 31, p. 77-84.
PMID: 24361767
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Physical Function Items in Older African Americans and Latinos.
Authors: Paz S.H. , Jones L. , Calderón J.L. , Hays R.D. .
Source: The Patient, 2017 02; 10(1), p. 117-131.
PMID: 27599978
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Validation of the PROMIS(®) measures of self-efficacy for managing chronic conditions.
Authors: Gruber-Baldini A.L. , Velozo C. , Romero S. , Shulman L.M. .
Source: Quality Of Life Research : An International Journal Of Quality Of Life Aspects Of Treatment, Care And Rehabilitation, 2017 Jul; 26(7), p. 1915-1924.
EPub date: 2017-02-26 00:00:00.0.
PMID: 28239781
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Most efficient questionnaires to measure quality of life, physical function, and pain in patients with metastatic spine disease: a cross-sectional prospective survey study.
Authors: Paulino Pereira N.R. , Janssen S.J. , Raskin K.A. , Hornicek F.J. , Ferrone M.L. , Shin J.H. , Bramer J.A.M. , van Dijk C.N. , Schwab J.H. .
Source: The Spine Journal : Official Journal Of The North American Spine Society, 2017 Jul; 17(7), p. 953-961.
EPub date: 2017-02-24 00:00:00.0.
PMID: 28242336
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The PROMIS fatigue item bank has good measurement properties in patients with fibromyalgia and severe fatigue.
Authors: Yost K.J. , Waller N.G. , Lee M.K. , Vincent A. .
Source: Quality Of Life Research : An International Journal Of Quality Of Life Aspects Of Treatment, Care And Rehabilitation, 2017 Jun; 26(6), p. 1417-1426.
EPub date: 2017-01-30 00:00:00.0.
PMID: 28138862
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A Multilevel Analysis of Patient Engagement and Patient-Reported Outcomes in Primary Care Practices of Accountable Care Organizations.
Authors: Shortell S.M. , Poon B.Y. , Ramsay P.P. , Rodriguez H.P. , Ivey S.L. , Huber T. , Rich J. , Summerfelt T. .
Source: Journal Of General Internal Medicine, 2017 Jun; 32(6), p. 640-647.
EPub date: 2017-02-03 00:00:00.0.
PMID: 28160187
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Pain interference and physical function demonstrate poor longitudinal association in people living with pain: a PROMIS investigation.
Authors: Karayannis N.V. , Sturgeon J.A. , Chih-Kao M. , Cooley C. , Mackey S.C. .
Source: Pain, 2017 Jun; 158(6), p. 1063-1068.
PMID: 28221284
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Differential item functioning of the patient-reported outcomes information system (PROMIS(®)) pain interference item bank by language (Spanish versus English).
Authors: Paz S.H. , Spritzer K.L. , Reise S.P. , Hays R.D. .
Source: Quality Of Life Research : An International Journal Of Quality Of Life Aspects Of Treatment, Care And Rehabilitation, 2017 Jun; 26(6), p. 1451-1462.
EPub date: 2017-02-21 00:00:00.0.
PMID: 28224257
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Performance of Hispanics and Non-Hispanic Whites on the NIH Toolbox Cognition Battery: the roles of ethnicity and language backgrounds.
Authors: Flores I. , Casaletto K.B. , Marquine M.J. , Umlauf A. , Moore D.J. , Mungas D. , Gershon R.C. , Beaumont J.L. , Heaton R.K. .
Source: The Clinical Neuropsychologist, 2017 May; 31(4), p. 783-797.
EPub date: 2017-01-12 00:00:00.0.
PMID: 28080261
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Predictors of Patient-Reported Function and Pain Outcomes in Operative Ankle Fractures.
Authors: Dean D.M. , Ho B.S. , Lin A. , Fuchs D. , Ochenjele G. , Merk B. , Kadakia A.R. .
Source: Foot & Ankle International, 2017 May; 38(5), p. 496-501.
EPub date: 2017-01-19 00:00:00.0.
PMID: 28103707
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Pregnancy context and women's health-related quality of life.
Authors: Gariepy A. , Lundsberg L.S. , Vilardo N. , Stanwood N. , Yonkers K. , Schwarz E.B. .
Source: Contraception, 2017 May; 95(5), p. 491-499.
EPub date: 2017-02-08 00:00:00.0.
PMID: 28188745
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Feasibility and pilot efficacy of a brief smoking cessation intervention delivered by vascular surgeons in the Vascular Physician Offer and Report (VAPOR) Trial.
Authors: Goodney P.P. , Spangler E.L. , Newhall K. , Brooke B.S. , Schanzer A. , Tan T.W. , Beck A.W. , Hallett J.H. , MacKenzie T.A. , Edelen M.O. , et al. .
Source: Journal Of Vascular Surgery, 2017 Apr; 65(4), p. 1152-1160.e2.
EPub date: 2017-02-09 00:00:00.0.
PMID: 28190719
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