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1. Patient-powered research networks: building capacity for conducting patient-centered clinical outcomes research

Author

Daugherty, Sarah E, Wahba, Sarita, Fleurence, Rachael, Avillach, Paul, Buelow, Janice, Colletti, Richard, Eichler, Florian, Ginsberg, Seth, Dewitt, Esi Morgan, McBurney, Robert, Merkel, Peter A, Mularski, Richard, Natter, Marc, Nierenberg, Andrew A, Horn, Liz, O'Boyle, Megan, Peay, Holly, Pletcher, Mark, Redline, Susan, Robinson, Bruce, Kappleman, Michael D, Sullivan, Kathleen E, Friedman, Sue, Sutphen, Rebecca, and Walsh, John

Subjects
Clinical Trials and Supportive Activities, Clinical Research, 8.4 Research design and methodologies (health services), Health and social care services research, Generic health relevance, Good Health and Well Being, Computer Communication Networks, Computer Security, Electronic Health Records, Humans, Outcome Assessment, Health Care, Patient Participation, Patient-Centered Care, United States, PCORnet PPRN Consortium, PCORI, PCORnet, PPRN, comparative effectiveness research, infrastructure development, Information and Computing Sciences, Engineering, Medical and Health Sciences, Medical Informatics
Abstract

The Patient-Centered Outcomes Research Institute (PCORI) recently launched PCORnet to establish a single inter-operable multicenter data research network that will support observational research and randomized clinical trials. This paper provides an overview of the patient-powered research networks (PPRNs), networks of patient organizations focused on a particular health condition that are interested in sharing health information and engaging in research. PPRNs will build on their foundation of trust within the patient communities and draw on their expertise, working with participants to identify true patient-centered outcomes and direct a patient-centered research agenda. The PPRNs will overcome common challenges including enrolling a diverse and representative patient population; engaging patients in governance; designing the data infrastructure; sharing data securely while protecting privacy; prioritizing research questions; scaling small networks into a larger network; and identifying pathways to sustainability. PCORnet will be the first distributed research network to bring PCOR to national scale.

Published
2014

2. Upper-Extremity and Mobility Subdomains From the Patient-Reported Outcomes Measurement Information System (PROMIS) Adult Physical Functioning Item Bank

Author

Hays, Ron D, Spritzer, Karen L, Amtmann, Dagmar, Lai, Jin-Shei, DeWitt, Esi Morgan, Rothrock, Nan, DeWalt, Darren A, Riley, William T, Fries, James F, and Krishnan, Eswar

Subjects
Allied Health and Rehabilitation Science, Health Sciences, Minority Health, Clinical Research, Bioengineering, Adult, Child, Chronic Disease, Disabled Persons, Factor Analysis, Statistical, Humans, Movement, Outcome Assessment, Health Care, Physical Fitness, Psychometrics, Lower extremity, Rehabilitation, Upper extremity, CFI, Confirmatory Fit Index, PFA, PFB, PFC, PROMIS, Patient-Reported Outcomes Measurement Information System, Physical Functioning-A, Physical Functioning-B, Physical Functioning-C, RMSEA, Root Mean Square Error of Approximation, Clinical Sciences, Human Movement and Sports Sciences, Public Health and Health Services, Clinical sciences, Allied health and rehabilitation science, Sports science and exercise
Abstract

ObjectiveTo create upper-extremity and mobility subdomain scores from the Patient-Reported Outcomes Measurement Information System (PROMIS) physical functioning adult item bank.DesignExpert reviews were used to identify upper-extremity and mobility items from the PROMIS item bank. Psychometric analyses were conducted to assess empirical support for scoring upper-extremity and mobility subdomains.SettingData were collected from the U.S. general population and multiple disease groups via self-administered surveys.ParticipantsThe sample (N=21,773) included 21,133 English-speaking adults who participated in the PROMIS wave 1 data collection and 640 Spanish-speaking Latino adults recruited separately.InterventionsNot applicable.Main outcome measuresWe used English- and Spanish-language data and existing PROMIS item parameters for the physical functioning item bank to estimate upper-extremity and mobility scores. In addition, we fit graded response models to calibrate the upper-extremity items and mobility items separately, compare separate to combined calibrations, and produce subdomain scores.ResultsAfter eliminating items because of local dependency, 16 items remained to assess upper extremity and 17 items to assess mobility. The estimated correlation between upper extremity and mobility was .59 using existing PROMIS physical functioning item parameters (r=.60 using parameters calibrated separately for upper-extremity and mobility items).ConclusionsUpper-extremity and mobility subdomains shared about 35% of the variance in common, and produced comparable scores whether calibrated separately or together. The identification of the subset of items tapping these 2 aspects of physical functioning and scored using the existing PROMIS parameters provides the option of scoring these subdomains in addition to the overall physical functioning score.

Published
2013

3. Atherosclerosis Progression in the APPLE Trial Can Be Predicted in Young People With Juvenile‐Onset Systemic Lupus Erythematosus Using a Novel Lipid Metabolomic Signature.

Author

Peng, Junjie, Dönnes, Pierre, Ardoin, Stacy P., Schanberg, Laura E., Lewandowski, Laura, Ardoin, Stacy, Dewitt, Esi Morgan, Rabinovich, C. Egla, Ellis, Janet, Mieszkalski, Kelly, Wootton, Janet, Chira, Peter, Hsu, Joyce, Lee, Tzielan, Sandborg, Christy, Perea, Jan, Gottlieb, Beth, Irigoyen, Patricia, Luftig, Jennifer, and Siddiqi, Shaz

Subjects
LIPID metabolism, ATHEROSCLEROSIS risk factors, ATHEROSCLEROSIS prevention, DISEASE progression, BIOMARKERS, CARDIOVASCULAR diseases risk factors, CAROTID intima-media thickness, ATORVASTATIN, ATHEROSCLEROSIS, RISK assessment, TREATMENT effectiveness, RANDOMIZED controlled trials, COMPARATIVE studies, DESCRIPTIVE statistics, SYSTEMIC lupus erythematosus, DISEASE complications, CHILDREN, ADOLESCENCE
Abstract

Objective: Patients with juvenile‐onset systemic lupus erythematosus (JSLE) have increased atherosclerosis risk. This study investigated novel atherosclerosis progression biomarkers in the Atherosclerosis Prevention in Pediatric Lupus Erythematosus (APPLE) trial, the largest investigator‐led randomized control trial of atorvastatin versus placebo for atherosclerosis progression in JSLE, using carotid intima‐media thickness (CIMT) as the primary outcome. Methods: Unsupervised clustering of baseline CIMT and CIMT progression over 36 months was used to stratify patients with JSLE. Disease characteristics, cardiovascular risk scores, and baseline serum metabolome were investigated in CIMT‐stratified patients. Machine learning techniques were used to identify and validate a serum metabolomic signature of CIMT progression. Results: Baseline CIMT stratified patients with JSLE (N = 151) into three groups with distinct high, intermediate, and low CIMT trajectories irrespective of treatment allocation, despite most patients having low cardiovascular disease risk based on recommended assessment criteria. In the placebo group (n = 60), patients with high versus low CIMT progression had higher total (P = 0.001) and low‐density lipoprotein (LDL) (P = 0.002) cholesterol levels, although within the reference range. Furthermore, a robust baseline metabolomic signature predictive of high CIMT progression was identified in the placebo arm (area under the curve, 80.7%). Patients treated with atorvastatin (n = 61) had reduced LDL cholesterol levels after 36 months, as expected; however, despite this, 36% still had high atherosclerosis progression, which was not predicted by metabolomic biomarkers, suggesting nonlipid drivers of atherosclerosis in JSLE with management implications for this subset of patients. Conclusion: Significant baseline heterogeneity and distinct subclinical atherosclerosis progression trajectories exist in JSLE. Metabolomic signatures can predict atherosclerosis progression in some patients with JSLE with relevance for clinical trial stratification. [ABSTRACT FROM AUTHOR]

Published
2024
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24. 2013 Update of the 2011 American College of Rheumatology Recommendations for the Treatment of Juvenile Idiopathic Arthritis: Recommendations for the Medical Therapy of Children With Systemic Juvenile Idiopathic Arthritis and Tuberculosis Screening Among Children Receiving Biologic Medications

Author

Ringold, Sarah, Weiss, Pamela F., Beukelman, Timothy, DeWitt, Esi Morgan, Ilowite, Norman T., Kimura, Yukiko, Laxer, Ronald M., Lovell, Daniel J., Nigrovic, Peter A., Robinson, Angela Byun, and Vehe, Richard K.

Published
2013
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25. Contributors

Author

Abramson, Jon S., primary, Abzug, Mark J., additional, Aiken, John J., additional, A-kader, H. Hesham, additional, Akdis, Cezmi A., additional, Alderman, Harold, additional, Alemzadeh, Ramin, additional, Alessandrini, Evaline A., additional, Ali, Omar, additional, Ambalavanan, Namasivayam, additional, Anderson, Karl E., additional, Anderson, Peter M., additional, Anthony, Kelly K., additional, Antoon, Alia Y., additional, Ardoin, Stacy P., additional, Arndt, Carola A.S., additional, Arnon, Stephen S., additional, Aronoff, Stephen C., additional, Asher, David M., additional, Asselin, Barbara L., additional, Ater, Joann L., additional, Atkins, Dan, additional, Augustine, Erika F., additional, Augustyn, Marilyn, additional, Avner, Ellis D., additional, Azimi, Parvin H., additional, Bacino, Carlos A., additional, Baldassano, Robert N., additional, Bales, Christina, additional, Balistreri, William F., additional, Baltimore, Robert S., additional, Balwani, Manisha, additional, Baqar, Shahida, additional, Barron, Christine E., additional, Bass, Dorsey M., additional, Batshaw, Mark L., additional, Behrman, Richard E., additional, Bell, Michael J., additional, Belmont, John W., additional, Benjamin, Daniel K., additional, Bennett, Michael J., additional, Bernstein, Daniel, additional, Bhatia, Jatinder, additional, Bhutta, Zulfiqar Ahmed, additional, Biesecker, Leslie G., additional, Birmingham, James, additional, Blanchard, Samra S., additional, Blanton, Ronald, additional, Bleyer, Archie, additional, Boamah, C.D.R. Lynelle M., additional, Boas, Steven R., additional, Boat, Thomas F., additional, Bockting, Walter, additional, Boguniewicz, Mark, additional, Bonthius, Daniel J., additional, Boxer, Laurence A., additional, Brandow, Amanda M., additional, Branski, David, additional, Breault, David T., additional, Buckley, Rebecca H., additional, Budek, Cynthia Etzler, additional, Buescher, E. Stephen, additional, Burstein, Gale R., additional, Bustinduy, Amaya Lopez, additional, Cairo, Mitchell S., additional, Camitta, Bruce M., additional, Campbell, Angela Jean Peck, additional, Carey, Rebecca G., additional, Carlo, Waldemar A., additional, Carrigan, Robert B., additional, Caserta, Mary T., additional, Chadwick, Ellen Gould, additional, Chamberlain, Lisa J., additional, Chapman, Jennifer I., additional, Cheifetz, Ira M., additional, Chemaitilly, Wassim, additional, Chen, Sharon F., additional, Chen, Yuan-Tsong, additional, Chesney, Russell W., additional, Chiriboga, Jennifer A., additional, Christensen, Robert D., additional, Chu, Andrew, additional, Chusid, Michael J., additional, Cieslak, Theodore J., additional, Clark, Jeff A., additional, Cleary, Thomas G., additional, Clemens, John David, additional, Cohen, Joanna S., additional, Cohen, Mitchell B., additional, Cohen, Pinchas, additional, Cohen-Wolkowiez, Michael, additional, Colbert, Robert A., additional, Cole, F. Sessions, additional, Cole, Joanna C.M., additional, Colombo, John L., additional, Cooper, Amber R., additional, Covar, Ronina A., additional, Cromer, Barbara, additional, Crowe, James E., additional, Cunningham, Natoshia Raishevich, additional, Czinn, Steven J., additional, Darville, Toni, additional, Daum, Robert S., additional, Davidson, Richard S., additional, Davies, H. Dele, additional, Dayan, Peter S., additional, DeBaun, Michael R., additional, Degaffe, Guenet H., additional, DeMaso, David R., additional, Denison, Mark R., additional, Dent, Arlene E., additional, DeSilva, Nirupama K., additional, Desnick, Robert J., additional, deVeber, Gabrielle, additional, DeWitt, Esi Morgan, additional, Dhamne, Chetan Anil, additional, Dhawan, Anil, additional, Dietz, Harry, additional, Donoghue, Lydia J., additional, Donohoue, Patricia A., additional, Donovan, Mary K., additional, Dormans, John P., additional, Doyle, Daniel A., additional, Doyle, Jefferson, additional, Dreskin, Stephen C., additional, Drummond, Denis S., additional, Dubowitz, Howard, additional, Dumler, J. Stephen, additional, Duncan, Janet, additional, Duncan, Paula M., additional, Dyner, LauraLe, additional, Earing, Michael G., additional, Edgerton, Elizabeth A., additional, Egan, Marie, additional, Elder, Jack S., additional, Eleoff, Sara B., additional, Elfenbein, Dianne S., additional, Eppes, Stephen C., additional, Ewald, Michele Burns, additional, Fairley, Jessica K., additional, Feigelman, Susan, additional, Felice, Marianne E., additional, Felner, Eric I., additional, Fels, Edward, additional, Ferkol, Thomas, additional, Finder, Jonathan D., additional, Fiorino, Kristin N., additional, Fleece, David M., additional, Flynn, Patricia M., additional, Forman, Joel A., additional, Frank, Michael M., additional, Freedman, Melvin H., additional, Frei-Jones, Melissa, additional, Friedman, Jared E., additional, Gahagan, Sheila, additional, Gardiner, Paula, additional, Garibaldi, Luigi, additional, Gauthier, Gregory M., additional, Gedalia, Abraham, additional, Gelmini, Matthew J., additional, Gerber, Michael A., additional, Gibson, K. Michael, additional, Gibson, Mark, additional, Gigliotti, Francis, additional, Gilliam, Walter S., additional, Gilsdorf, Janet R., additional, Ginsburg, Charles M., additional, Glascoe, Frances P., additional, Goldmann, Donald A., additional, Goodman, Denise M., additional, Gorelick, Marc H., additional, Gosselin, Gary J., additional, Gould, Jane M., additional, Goulet, Olivier, additional, Granoff, Dan M., additional, Green, Michael, additional, Green, Thomas P., additional, Greenbaum, Larry A., additional, Grino, Marie Michelle, additional, Grossman, Andrew B., additional, Grossman, David C., additional, Guarino, Alfredo, additional, Hackney, Lisa R., additional, Haddad, Gabriel G., additional, Haddad, Joseph, additional, Hagan, Joseph F., additional, Halstead, Scott B., additional, Hammerschlag, Margaret R., additional, Hamvas, Aaron, additional, Harris, James C., additional, Hartman, Mary E., additional, Haslam, David B., additional, Hauck, Fern R., additional, Hayden, Gregory F., additional, Hecht, Jacqueline T., additional, Heidemann, Sabrina M., additional, Hendley, J. Owen, additional, Henretig, Fred M., additional, Heresi, Gloria P., additional, Hershey, Andrew D., additional, Herzog, Cynthia E., additional, Hochberg, Jessica, additional, Holinger, Lauren D., additional, Hord, Jeffrey D., additional, Horn, B. David, additional, Horton, William A., additional, Hosalkar, Harish S., additional, Hosono, Hidekazu, additional, Hotez, Peter J., additional, Howenstine, Michelle S., additional, Huddleston, Heather G., additional, Huff, Vicki, additional, Hug, Denise, additional, Huh, Winston W., additional, Hunt, Carl E., additional, Hunter, Anna Klaudia, additional, Ibeziako, Patricia, additional, Jacobs, Richard F., additional, Jensen, Peter, additional, Jenson, Hal B., additional, John, Chandy C., additional, Johnston, Michael V., additional, Johnston, Richard B., additional, Jones, Bridgette L., additional, Jones, James F., additional, Joselow, Marsha, additional, Kalaskar, Anupama, additional, Kaljee, Linda, additional, Kamat, Deepak, additional, Kansra, Alvina R., additional, Kaplan, Sheldon L., additional, Katz, Emily R., additional, Kazura, James W., additional, Keane, Virginia, additional, Kearns, Gregory L., additional, Kelly, Desmond P., additional, Kelsen, Judith, additional, Kemper, Kathi J., additional, Kennedy, Melissa, additional, Kerem, Eitan, additional, Kerschner, Joseph E., additional, Khan, Seema, additional, Kim, Young-Jee, additional, King, Charles H., additional, Kinsman, Stephen L., additional, Kirton, Adam, additional, Kishnani, Priya S., additional, Kizer, Nora T., additional, Kleiman, Martin B., additional, Klein, Bruce L., additional, Klein, Bruce S., additional, Klein, Michael D., additional, Kliegman, Robert M., additional, Koch, William C., additional, Kochanek, Patrick M., additional, Kodish, Eric, additional, Kohlhoff, Stephan A., additional, Krane, Elliot J., additional, Krause, Peter J., additional, Kreipe, Richard E., additional, Krug, Steven E., additional, Kuttesch, John F., additional, Kwon, Jennifer M., additional, Lachenauer, Catherine S., additional, Ladisch, Stephan, additional, LaFranchi, Stephen, additional, Lakser, Oren, additional, Lande, Marc B., additional, Landrigan, Philip J., additional, Landry, Gregory L., additional, Lane, Wendy G., additional, LaRussa, Philip S., additional, Lee, Brendan, additional, Lee, Chul, additional, Lee, K. Jane, additional, Leeder, J. Steven, additional, Lehman, Rebecca K., additional, Lentze, Michael J., additional, Lerner, Norma B., additional, Lestrud, Steven, additional, Leung, Donald Y.M., additional, Liacouras, Chris A., additional, Liewer, Susanne, additional, Liu, Andrew H., additional, Lo, Stanley F., additional, Locatelli, Franco, additional, Long, Sarah S., additional, Lopez, Anna Lena, additional, Lossef, Steven V., additional, Lowry, Jennifer A., additional, Lucco, Kerith, additional, Lyon, G. Reid, additional, Mahajan, Prashant V., additional, Maheshwari, Akhil, additional, Majzoub, Joseph A., additional, Maqbool, Asim, additional, Maranich, Ashley M., additional, Marin, Mona, additional, Marini, Joan C., additional, Markowitz, Morri, additional, Marks, Kevin P., additional, Maroushek, Stacene R., additional, Mason, Wilbert H., additional, Mastropietro, Christopher, additional, Matalon, Kimberlee M., additional, Matalon, Reuben K., additional, Mazor, Robert, additional, McColley, Susanna A., additional, McGovern, Margaret M., additional, McLean, Heather S., additional, McLeod, Rima, additional, Melby, Peter C., additional, Melvin, Joseph John, additional, Merritt, Diane F., additional, Mezoff, Ethan A., additional, Michaels, Marian G., additional, Miethke, Alexander G., additional, Mikati, Mohamad A., additional, Milgrom, Henry, additional, Miller, E. Kathryn, additional, Mink, Jonathan W., additional, Mitchell, Grant A., additional, Montgomery, Robert R., additional, Morelli, Joseph G., additional, Moscicki, Anna-Barbara, additional, Moser, Hugo W., additional, Moyer, Kathryn D., additional, Murphy, James R., additional, Murphy, Timothy F., additional, Murray, Thomas S., additional, Natale, Mindo J., additional, Neal, William A., additional, Ness, Jayne, additional, Neville, Kathleen A., additional, Nevin, Mary A., additional, Newburger, Jane W., additional, Newburger, Peter E., additional, Nield, Linda S., additional, Noah, Zehava, additional, Nogee, Lawrence M., additional, Norris, Robert L., additional, Obaro, Stephen K., additional, Obeid, Makram, additional, Ochoa, Theresa J., additional, O'Donnell, Katherine A., additional, Ohls, Robin K., additional, Okwo-Bele, Jean-Marie, additional, Oldham, Keith T., additional, Olitsky, Scott E., additional, Olsson, John, additional, Orenstein, Susan R., additional, Orenstein, Walter A., additional, Owens, Judith A., additional, Packman, Charles H., additional, Painter, Michael J., additional, Pais, Priya, additional, Pan, Cynthia G., additional, Pannikar, Vijay, additional, Pappas, Diane E., additional, Parish, Anjali, additional, Parks, John S., additional, Parks, Laura A., additional, Patterson, Maria Jevitz, additional, Patwari, Pallavi P., additional, Peters, Timothy R., additional, Pickering, Larry K., additional, Pless, Misha L., additional, Plummer, Laura S., additional, Porter, Craig C., additional, Powell, Dwight A., additional, Price, David T., additional, Prober, Charles G., additional, Quan, Linda, additional, Quint, Elisabeth H., additional, Rabinovich, C. Egla, additional, Raffini, Leslie J., additional, Ramirez-Montealegre, Denia, additional, Raviola, Giuseppe, additional, Reed, Ann M., additional, Rekate, Harold L., additional, Reller, Megan E., additional, Remafedi, Gary, additional, Reyes, Jorge D., additional, Rezvani, Geoffrey, additional, Rezvani, Iraj, additional, Ritchey, A. Kim, additional, Rivara, Frederick P., additional, Robinson, Angela Byun, additional, Rogg, Luise E., additional, Roosevelt, Genie E., additional, Rosenberg, David R., additional, Rosenberg, Melissa Beth, additional, Rosenblatt, David S., additional, Roskind, Cindy Ganis, additional, Rotar, Mary M., additional, Rozenfeld, Ranna A., additional, Rush, Sarah Zieber, additional, Ryan, Colleen A., additional, Sachdev, H.P.S., additional, Sachdeva, Ramesh C., additional, Sahin, Mustafa, additional, Salata, Robert A., additional, Salerno, Denise A., additional, Salvana, Edsel Maurice T., additional, Sampson, Hugh A., additional, Sandora, Thomas J., additional, Sandritter, Tracy, additional, Sankar, Wudbhav N., additional, Sarnaik, Ajit Ashok, additional, Sarnaik, Ashok P., additional, Sarnat, Harvey B., additional, Sarwal, Minnie M., additional, Saunders, Mary, additional, Schanberg, Laura E., additional, Schleiss, Mark R., additional, Schor, Nina F., additional, Schroeder, Bill J., additional, Schum, Robert L., additional, Schutze, Gordon E., additional, Scott, Daryl A., additional, Scott, J. Paul, additional, Sectish, Theodore C., additional, Segel, George B., additional, Sehgal, Kriti, additional, Seidman, Ernest G., additional, Serwint, Janet R., additional, Shah, Dheeraj, additional, Shamir, Raanan, additional, Shapiro, Bruce K., additional, Shaw, Richard J., additional, Shaywitz, Bennett A., additional, Shaywitz, Sally E., additional, Shekar, Meera, additional, Shephard, Elena, additional, Sherman, Philip M., additional, Shneider, Benjamin L., additional, Sicherer, Scott H., additional, Sills, Richard, additional, Simms, Mark D., additional, Simões, Eric A.F., additional, Slovis, Thomas L., additional, Smith, P. Brian, additional, Son, Mary Beth F., additional, Sosinsky, Laura Stout, additional, Spahn, Joseph D., additional, Sperling, Mark A., additional, Spicer, Robert, additional, Spiegel, David A., additional, Spoudeas, Helen, additional, Spranger, Jürgen, additional, Sreedharan, Rajasree, additional, Sreedharan, Raman, additional, Stafford, Shawn J., additional, Stager, Margaret M., additional, Stagno, Sergio, additional, Stallings, Virginia A., additional, Stanberry, Lawrence R., additional, Stanley, Charles A., additional, Stanton, Bonita F., additional, Starke, Jeffrey R., additional, Stass-Isern, Merrill, additional, Stechenberg, Barbara W., additional, Stein, Leonard D., additional, Steinbach, William J., additional, Stettler, Nicolas, additional, Stoll, Barbara J., additional, Storch, Gregory A., additional, Strauss, Ronald G., additional, Suchy, Frederick J., additional, Summar, Karen, additional, Szilagyi, Moira, additional, Tinanoff, Norman, additional, Todd, James K., additional, Tompkins, Lucy S., additional, Tower, Richard L., additional, Troncone, Riccardo, additional, Trott, Amanda A., additional, Tubergen, David G., additional, Turner, David A., additional, Turner, Ronald B., additional, Ullrich, Christina, additional, Van Hare, George F., additional, van Ingen, Jakko, additional, Van Mater, Heather A., additional, van Soolingen, Dick, additional, Van Why, Scott K., additional, Vandana, Pankhuree, additional, Vanderbilt, Douglas, additional, Vanderhoof, Jon A., additional, Velardi, Andrea, additional, Vichinsky, Elliott, additional, Waggoner-Fountain, Linda A., additional, Waguespack, Steven G., additional, Walker, David M., additional, Walter, Heather J., additional, Ware, Stephanie, additional, Watts, Kimberly Danieli, additional, Waxman, Ian M., additional, Weese-Mayer, Debra E., additional, Weise, Kathryn, additional, Weisse, Martin E., additional, Wells, Lawrence, additional, Wen, Jessica, additional, Werlin, Steven L., additional, Wessels, Michael R., additional, Wetmore, Ralph F., additional, Wetzel, Randall C., additional, Wexler, Isaiah D., additional, White, Perrin C., additional, Williams, John V., additional, Willoughby, Rodney E., additional, Wilson, Samantha L., additional, Winnie, Glenna B., additional, Wise, Paul H., additional, Woc-Colburn, Laila, additional, Wolfe, Joanne, additional, Wong, Cynthia J., additional, Worth, Laura L., additional, Wright, Joseph L., additional, Wright, Peter F., additional, Wright, Terry W., additional, Wu, Eveline Y., additional, Wynshaw-Boris, Anthony, additional, Yazigi, Nada, additional, Yogev, Ram, additional, Yudkoff, Marc, additional, Zage, Peter E., additional, Zaidi, Anita K.M., additional, Zeltzer, Lonnie K., additional, Zile, Maija H., additional, Zimmer, Peter, additional, and Zuckerman, Barry, additional

Published
2011
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30. Classification, presentation, and initial treatment of Wegenerʼs granulomatosis in childhood

Author

Cabral, David A., Uribe, América G., Benseler, Susanne, OʼNeil, Kathleen M., Hashkes, Philip J., Higgins, Gloria, Zeft, Andrew S., Lovell, Daniel J., Kingsbury, Daniel J., Stevens, Anne, McCurdy, Deborah, Chira, Peter, Abramson, Leslie, Arkachaisri, Thaschawee, Campillo, Sarah, Eberhard, Anne, Hersh, Aimee O., Huber, Adam M., Kim, Susan, Klein-Gitelman, Marisa, Levy, Deborah M., Li, Suzanne C., Mason, Thomas, DeWitt, Esi Morgan, Muscal, Eyal, Nassi, Lorien, Reiff, Andreas, Schikler, Kenneth, Singer, Nora G., Wahezi, Dawn, and Woodward, Amy

Published
2009
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35. Medicare coverage of tumor necrosis factor (alpha) inhibitors as an influence on physicians' prescribing behavior

Author

DeWitt, Esi Morgan, Glick, Henry A., Albert, Daniel A., Joffe, Marshall M., and Wolfe, Frederick

Subjects
Rheumatoid arthritis -- Drug therapy, Rheumatoid arthritis -- Demographic aspects, Antirheumatic agents -- Prices and rates, Physicians -- Behavior, Prescription writing -- Research, Medical care, Cost of -- Influence, Prescription drug plans -- Laws, regulations and rules, Medicare, Company pricing policy, Government regulation, Health
Published
2006

36. Validation of Patient-Reported Outcomes Measurement Information System (PROMIS®) Short Forms for Use in Childhood-onset Systemic Lupus Erythematosus

Author

Jones, Jordan T., Carle, Adam C., Wootton, Janet, Liberio, Brianna, Lee, Jiha, Schanberg, Laura E., Ying, Jun, DeWitt, Esi Morgan, and Brunner, Hermine I.

Subjects
Cohort Studies, Male, Young Adult, Adolescent, Surveys and Questionnaires, Humans, Lupus Erythematosus, Systemic, Female, Longitudinal Studies, Patient Reported Outcome Measures, Child, Article
Abstract

To validate the pediatric Patient-Reported Outcomes Measurement Information System short forms (PROMIS-SFs) in childhood-onset systemic lupus erythematosus (SLE) in a clinical setting.At 3 study visits, childhood-onset SLE patients completed the PROMIS-SFs (anger, anxiety, depressive symptoms, fatigue, physical function-mobility, physical function-upper extremity, pain interference, and peer relationships) using the PROMIS assessment center, and health-related quality of life (HRQoL) legacy measures (Pediatric Quality of Life Inventory, Childhood Health Assessment Questionnaire, Simple Measure of Impact of Lupus Erythematosus in Youngsters [SMILEY], and visual analog scales [VAS] of pain and well-being). Physicians rated childhood-onset SLE activity on a VAS and completed the Systemic Lupus Erythematosus Disease Activity Index 2000. Using a global rating scale of change (GRC) between study visits, physicians rated change of childhood-onset SLE activity (GRC-MD1: better/same/worse) and change of patient overall health (GRC-MD2: better/same/worse). Questionnaire scores were compared in support of validity and responsiveness to change (external standards: GRC-MD1, GRC-MD2).In this population-based cohort (n = 100) with a mean age of 15.8 years (range 10-20 years), the PROMIS-SFs were completed in less than 5 minutes in a clinical setting. The PROMIS-SF scores correlated at least moderately (Pearson's r ≥ 0.5) with those of legacy HRQoL measures, except for the SMILEY. Measures of childhood-onset SLE activity did not correlate with the PROMIS-SFs. Responsiveness to change of the PROMIS-SFs was supported by path, mixed-model, and correlation analyses.To assess HRQoL in childhood-onset SLE, the PROMIS-SFs demonstrated feasibility, internal consistency, construct validity, and responsiveness to change in a clinical setting.

Published
2016

39. Initial Benchmarking of the Quality of Medical Care of Childhood-Onset Systemic Lupus Erythematosus

Author

Mina, Rina, Harris, Julia G., Klein-Gitelman, Marisa S., Appenzeller, Simone, Centeville, Maraisa, Eskra, Diane, Huggins, Jennifer L., Johnson, Anne L., Khubchandani, Raju, Khandekar, Prachi, Lee, Jiha, Liu, HaiMei, Pendl, Joshua D., Silva, Clovis A., Silva, Marco F., Zaal, Ahmad I., DeWitt, Esi Morgan, Ardoin, Stacy P., and Brunner, Hermine I.

Subjects
Adult, Male, Benchmarking, Young Adult, Adolescent, Humans, Lupus Erythematosus, Systemic, Female, Article, Quality Indicators, Health Care
Abstract

To assess the quality of medical care in childhood-onset systemic lupus erythematosus (SLE) at tertiary pediatric rheumatology centers as measured by observance of SLE quality indicators (SLE-QIs).International consensus has been achieved for childhood-onset SLE-QIs capturing medical care provision in 9 domains: diagnostic testing, education of cardiovascular (CV) risk and lifestyles, lupus nephritis (LN), medication management, bone health, ophthalmologic surveillance, transition, pregnancy, and vaccination. Using medical record information, the level of performance of these childhood-onset SLE-QIs was assessed in childhood-onset SLE populations treated at 4 tertiary pediatric rheumatology centers in the US, 2 in Brazil, and 1 center in India.A total of 483 childhood-onset SLE patients were assessed. Care for the 310 US patients differed markedly for childhood-onset SLE-QIs addressing LN, bone health, vaccinations, education on CV risk, and transition planning. Performance of safety blood testing for medications was high at all centers. Despite often similar performance on the childhood-onset SLE-QI, access to kidney biopsies was lower in Brazil than in the US. Irrespective of the country of practice, larger centers tended to meet the childhood-onset SLE-QIs more often than smaller centers.The childhood-onset SLE-QIs, evidence-based minimum standards of medical care, are not consistently met in the US or some other countries outside the US. This has the potential to contribute to suboptimal childhood-onset SLE outcomes.

Published
2016

40. Development and Retrospective Validation of the Juvenile Spondyloarthritis Disease Activity (JSpADA) Index

Author

Weiss, Pamela F., Colbert, Robert A., Xiao, Rui, Feudtner, Chris, Beukelman, Timothy, DeWitt, Esi Morgan, Pagnini, Ilaria, Wright, Tracey B., and Wallace, Carol A.

Subjects
Male, Adolescent, Delphi Technique, Health Status, Severity of Illness Index, Article, Rheumatology, Surveys and Questionnaires, Spondylarthritis, Humans, Female, Child, Pain Measurement, Retrospective Studies
Abstract

To develop and validate the Juvenile Spondyloarthritis Disease Activity Index (JSpADA) for use in clinical practice and research.Using modified Delphi consensus techniques, 10 items were selected by participants in the international pediatric rheumatology listserv, the Childhood Arthritis and Rheumatology Research Alliance, and the listserv for the pediatric section of the American College of Rheumatology. Validation was performed in a retrospective multicenter cohort of 244 children.In total, 106 physicians representing 14 countries completed the initial questionnaire. Completion rates for the subsequent questionnaires were 84%, 75%, and 77% of the original respondents. Ten items exceeded 80% consensus: arthritis, enthesitis, patient pain assessment, inflammatory markers, morning stiffness, clinical sacroiliitis, uveitis, back mobility, and patient and physician assessments of disease activity. After item analysis, 2 items were eliminated (patient and physician assessments of disease activity). Factor analysis identified 3 primary domains that explained 58% of the variance: peripheral disease, axial disease, and uveitis. The Cronbach's α coefficient was 0.66. The JSpADA had high or moderate correlations with the Juvenile Arthritis Disease Activity Score (r = 0.81), patient and physician assessments of disease activity (r = 0.70 and r = 0.66, respectively), and the Childhood Health Assessment Questionnaire (r = 0.56). The JSpADA discriminated well between subjects with active versus inactive disease (P0.001) and was responsive to improvement or worsening in disease activity over time (P0.001).Using international input and consensus formation techniques, we developed and validated the first disease activity assessment for juvenile spondyloarthritis. Future studies should validate the JSpADA in a prospective multicenter cohort.

Published
2014

41. Childhood Arthritis and Rheumatology Research Alliance Consensus Treatment Plans for New Onset Polyarticular Juvenile Idiopathic Arthritis

Author

Ringold, Sarah, Weiss, Pamela F., Colbert, Robert A., DeWitt, Esi Morgan, Lee, Tzielan, Onel, Karen, Prahalad, Sampath, Schneider, Rayfel, Shenoi, Susan, Vehe, Richard K., and Kimura, Yukiko

Subjects
Consensus, Early Diagnosis, Clinical Protocols, Rheumatology, Humans, Registries, Child, Pediatrics, Article, Arthritis, Juvenile
Abstract

There is no standardized approach to the initial treatment of polyarticular juvenile idiopathic arthritis (JIA) among pediatric rheumatologists. Understanding the comparative effectiveness of the diverse therapeutic options available will result in better health outcomes for polyarticular JIA. The Childhood Arthritis and Rheumatology Research Alliance (CARRA) developed consensus treatment plans (CTPs) for use in clinical practice to facilitate such studies.A case-based survey was administered to CARRA members to identify the common treatment approaches for new-onset polyarticular JIA. Two face-to-face consensus conferences employed modified nominal group technique to identify treatment strategies, operational case definition, end points, and data elements to be collected. A core workgroup reviewed the relevant literature, refined plans, and developed medication dosing and monitoring recommendations.The initial case-based survey identified significant variability among treatment approaches for new-onset polyarticular JIA. We developed 3 CTPs based on treatment strategies for the first 12 months of therapy, as well as case definitions and clinical and laboratory monitoring schedules. The CTPs include a step-up plan (nonbiologic disease-modifying antirheumatic drug [DMARD] followed by a biologic DMARD), an early combination plan (nonbiologic and biologic DMARD combined within a month of treatment initiation), and a biologic only plan. This approach was approved by 96% of the CARRA JIA Research Committee members attending the 2013 CARRA face-to-face meeting.Three standardized CTPs were developed for new-onset polyarticular JIA. Coupled with data collection at defined intervals, use of these CTPs will enable the study of their comparative effectiveness in an observational setting to optimize initial management of polyarticular JIA.

Published
2014

42. Measuring Process of Arthritis Care. A Proposed Set of Quality Measures for the Process of Care in Juvenile Idiopathic Arthritis

Author

Passo, Murray H., Henrickson, Michael, Stein, Leonard D., Gottlieb, Beth S., Ilowite, Norman T., DeWitt, Esi Morgan, Vehe, Richard K., Giannini, Edward H., Bowyer, Suzanne L., Taylor, Janalee, Segerman, Jill, Lovell, Daniel J., Beukelman, Timothy, and Kimura, Yukiko

Subjects
genetic structures
Abstract

The ability to assess quality of care is a necessary component of continuous quality improvement. The assessment typically is accomplished by determination of compliance with a defined set of quality measures (QMs). The objective of this effort was to establish a set of QM for the assessment of the process of care in JIA.

Published
2011
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44. Initial Benchmarking of the Quality of Medical Care in Childhood-Onset Systemic Lupus Erythematosus

Author

Mina, Rina, primary, Harris, Julia G., additional, Klein-Gitelman, Marisa S., additional, Appenzeller, Simone, additional, Centeville, Maraisa, additional, Eskra, Diane, additional, Huggins, Jennifer L., additional, Johnson, Anne L., additional, Khubchandani, Raju, additional, Khandekar, Prachi, additional, Lee, Jiha, additional, Liu, Hai Mei, additional, Pendl, Joshua D., additional, Silva, Clovis A., additional, Silva, Marco F., additional, Zaal, Ahmad I., additional, DeWitt, Esi Morgan, additional, Ardoin, Stacy P., additional, and Brunner, Hermine I., additional

Published
2016
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46. 2013 Update of the 2011 American College of Rheumatology Recommendations for the Treatment of Juvenile Idiopathic Arthritis

Author

Ringold, Sarah, primary, Weiss, Pamela F., additional, Beukelman, Timothy, additional, DeWitt, Esi Morgan, additional, Ilowite, Norman T., additional, Kimura, Yukiko, additional, Laxer, Ronald M., additional, Lovell, Daniel J., additional, Nigrovic, Peter A., additional, Robinson, Angela Byun, additional, and Vehe, Richard K., additional

Published
2014
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48. A147: Engaging Patients and Families in the Pediatric Rheumatology Care and Outcomes Improvement Network

Author

DeWitt, Esi Morgan, primary, Fricke, Kay, additional, Bergheger, Lindsey, additional, Griffin, Nancy, additional, Laxer, Ronald M., additional, Jones, Karla B., additional, Gottlieb, Beth S., additional, Taylor, Janalee, additional, Mims, Catherine C., additional, Robbins, Lisa M., additional, Lovell, Daniel J., additional, and Noonan, Laura, additional

Published
2014
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49. A180: A Population Management Tool for Proactive Care of Juvenile Idiopathic Arthritis in the Pediatric Rheumatology Care and Outcomes Improvement Network

Author

Ardoin, Stacy P., primary, Bingham, C. April, additional, Gottlieb, Beth S., additional, Laxer, Ronald M., additional, Passo, Murray H., additional, Lovell, Daniel, additional, Weiss, Jennifer E., additional, Vora, Sheetal S., additional, Lee, Tzielan C., additional, Griffith, Nancy, additional, and DeWitt, Esi Morgan, additional

Published
2014
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