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1. Performance of Self-Report to Establish Cancer Diagnoses in Disaster Responders and Survivors, World Trade Center Health Registry, New York, 2001-2007

Author

Mark R. Farfel, Jiehui Li, David Wu, Abigail K. Alt, Jonathan M. Liff, James E. Cone, and Steven D. Stellman

Subjects
Adult, medicine.medical_specialty, Adolescent, Population, MEDLINE, New York, 03 medical and health sciences, Young Adult, 0302 clinical medicine, Public health surveillance, Neoplasms, Epidemiology, medicine, Humans, 030212 general & internal medicine, Registries, Young adult, education, Aged, education.field_of_study, business.industry, Medical record, Research, Public Health, Environmental and Occupational Health, Cancer, Middle Aged, medicine.disease, 030220 oncology & carcinogenesis, Cohort, Female, Medical emergency, Self Report, September 11 Terrorist Attacks, business
Abstract

Objective. Large-scale disasters may disrupt health surveillance systems, depriving health officials and researchers of timely and accurate information needed to assess disaster-related health effects and leading to use of less reliable self-reports of health outcomes. In particular, ascertainment of cancer in a population is ordinarily obtained through linkage of self-reported data with regional cancer registries, but exclusive reliance on these sources following a disaster may result in lengthy delays or loss of critical data. To assess the impact of such reliance, we validated self-reported cancer in a cohort of 59,340 responders and survivors of the World Trade Center disaster against data from 11 state cancer registries (SCRs). Methods. We focused on residents of the 11 states with SCRs and on cancers diagnosed from September 11, 2001, to the date of their last survey participation. Medical records were also sought in a subset of 595 self-reported cancer patients who were not recorded in an SCR. Results. Overall sensitivity and specificity of self-reported cancer were 83.9% (95% confidence interval [CI] 81.9, 85.9) and 98.5% (95% CI 98.4, 98.6), respectively. Site-specific sensitivities were highest for pancreatic (90.9%) and testicular (82.4%) cancers and multiple myeloma (84.6%). Compared with enrollees with true-positive reports, enrollees with false-negative reports were more likely to be non-Hispanic black (adjusted odds ratio [aOR] = 1.8, 95% CI 1.2, 2.9) or Asian (aOR=2.2, 95% CI 1.2, 4.1). Among the 595 cases not recorded in an SCR, 13 of 62 (21%) cases confirmed through medical records were reportable to SCRs. Conclusion. Self-report of cancer had relatively high sensitivity among adults exposed to the World Trade Center disaster, suggesting that self-reports of other disaster-related conditions less amenable to external validation may also be reasonably valid.

Published
2016

2. List of Contributors

Author

Juan-Carlos Abad, Mark B Abelson, David H Abramson, Martin A Acquadro, Anthony P Adamis, Wesley H Adams, Natalie A Afshari, Everett Ai, Lloyd M Aiello, Lloyd P Aiello, Levent Akduman, Marissa L Albano, Daniel M. Albert, Terry J Alexandrou, Eduardo C Alfonso, Jorge L Alié, Hassan Alizadeh, Ibrahim A Al Jadaan, Sabah Al-Jastaneiah, Calliope E Allen, David Allen, Robert C Allen, Albert Alm, Samar Al-Swailem, Abigail K Alt, Michael M Altaweel, Russell Anderson, Christopher M Andreoli, Sofia Androudi, Leonard PK Ang, Fahd Anzaar, David J Apple, Claudia A Arrigg, Pablo Artal, Penny Asbell, George K Asdourian, Neal Atebara, Pelin Atmaca-Sonmez, Isabelle Audo, Gerd U Auffarth, Robin K Avery, Dimitri T Azar, Ann S Baker, Mark Balles, Scott D Barnes, Donald M Barnett, Neal P Barney, Fina C Barouch, George B Bartley, Jason JS Barton, Irmgard Behlau, Jose I Belda, Jeffrey L Bennett, Timothy J Bennett, Gregg J Berdy, Carlo Roberto Bernardino, Vitaliano Bernardino, Eliot L Berson, Amitabh Bharadwaj, Robert Bhisitkul, Ravinder D Bhui, Jurij Bilyk, Valérie Biousse, Alan C Bird, Norman Paul Blair, Barbara A Blodi, Mark S Blumenkranz, H Culver Boldt, Mark S Borchert, Luigi Borrillo, Gary E Borodic, S Arthur Boruchoff, Swaraj Bose, Michael E Boulton, RW Bowman, Elizabeth A Bradley, Periklis D Brazitikos, Robert Breeze, Neil M Bressler, Susan B Bressler, Alfred Brini, Donald L Budenz, Angela N Buffenn, Scott E Burk, Salim Butrus, David Callanan, J Douglas Cameron, Louis B Cantor, William A Cantore, Jorge Cantu-Dibildox, Victoria Casas, Miriam Casper, Robin J Casten, Yara P Catoira, Jerry Cavallerano, Samantha J Chai, Maria R Chalita, Sherman M Chamberlain, Audrey S Chan, Chi-Chao Chan, Paul Chan, Matthew J Chapin, Karen L Chapman, Eric Chen, Joe Chen, Julie A Chen, Teresa C Chen, Zhou Chen, Patricia Chévez-Barrios, Emily Y Chew, Mark Chiang, James Chodosh, Eva-Marie Chong, Denise Chun, Leo T Chylack, Antonio P Ciardella, Mortimer Civan, Liane Clamen, John I Clark, Glenn Cockerham, Andre Cohen, Elisabeth J Cohen, Kathryn A Colby, Anne L Coleman, Hanna R Coleman, Joseph Colin, J Michael Collier, Grant M Comer, M Ronan Conlon, Kim E Cooper, James J Corbett, Miguel C Coma, Marshall N Cyrlin, Linda R Dagi, Matthew A Dahlgren, Timothy J Daley, Andrea P Da Mata, Bertil Damato, Donald J D'Amico, Reza Dana, Aude Danan-Husson, Helen B Danesh-Meyer, Ronald P Danis, Jason K Darlington, Stefanie L Davidson, Janet L Davis, Elizabeth A Davis, Jose J de la Cruz, Adam G de la Garza, Margaret M DeAngelis, Sheri L DeMartelaere, Joseph L Demer, Avninder Dhaliwal, J Paul Dieckert, Diana V Do, Marshall G Doane, Christopher Dodds, Claes H Dohlman, Guy Donati, Eric D Donnenfeld, Arlene Drack, Thaddeus P Dryja, David Dueker, Jay S Duker, Jennifer A Dunbar, James P Dunn, William J Dupps, Marlene L Durand, Jonathan J Dutton, Chiara M Eandi, Deepak P Edward, Robert A Egan, David A Eichenbaum, Susan E Eklund, Elizabeth C Engle, Kristine Erickson, Bita Esmaeli, Aaron Fay, Leonard Feiner, Sharon Fekrat, Frederick L Ferris, Howard F Fine, Donald C Fletcher, Paul Flikier, Richard P Floyd, Harry W Flynn, Donald S Fong, Ramon L Font, Brian JR Forbes, Rod Foroozan, Bradley S Foster, C Stephen Foster, Jill A Foster, Gary N Foulks, Tamara R Fountain, Gregory M Fox, Thomas F Freddo, Sharon F Freedman, K Bailey Freund, Thomas R Friberg, Alan H Friedman, David Friedman, Deborah I Friedman, Ephraim Friedman, Arthur D Fu, Anne B Fulton, Ahmed Galal, Steven Galetta, Mark Gallardo, Brenda Gallie, Alec Garner, James A Garrity, Damien Gatinel, Steven J Gedde, Craig E Geist, Steve Gerber, Ramon C Ghanem, Jon P Gieser, Michael S Gilmore, Howard V Gimbel, Ilene K Gipson, Tyrone Glover, Robert A Goldberg, Mordechai Goldenfeld, Scott M Goldstein, Cintia F Gomi, Haiyan Gong, John A Gonzales, John Goosey, Justin L Gottlieb, Joshua Gould, Evangelos S Gragoudas, David B Granet, Michael J Greaney, Daniel G Green, Franz Grehn, Jack V Greiner, Craig M Greven, Gregory J Griepentrog, Carl Groenewald, Cynthia L Grosskreutz, Lori Latowski Grover, Vamsi K Gullapalli, Padma Gulur, Jonathan Gunther, Manish Gupta, Mayank Gupta, David R Guyer, Darin R Haivala, Julia A Haller, GM Halmagyi, Lawrence S Halperin, Islam M Hamdi, Steven R Hamilton, Kristin M Hammersmith, Dennis P Han, Ronald M Hansen, J William Harbour, Seenu M Hariprasad, Mona Harissi-Dagher, Shirin E. Hassan, Mark P Hatton, Pamela Hawley, Yasutaka Hayashida, John R Heckenlively, Thomas R Hedges, Alfred D Heggie, Katrinka L Heher, Jeffrey S Heier, J Fielding Hejtmancik, Bonnie A Henderson, Peter S Hersh, Ahmed A Hidayat, Eva Juliet Higginbotham, Tatsuo Hirose, Allen C Ho, ThucAnh T Ho, R Nick Hogan, David E Holck, Nancy M Holekamp, Peter G Hovland, Thomas C Hsu, William C Hsu, Andrew JW Huang, Mark S Hughes, Jennifer Hui, David G Hunter, Laryssa A Huryn, Deeba Husain, Robert A Hyndiuk, Michael Ip, Brian J Jacobs, Frederick A Jakobiec, Lee M Jampol, Harold G Jensen, Fei Ji, David L Johnson, Douglas H Johnson, Mark W Johnson, R Paul Johnson, Robert N Johnson, Karen M Joos, Nancy C Joyce, J Michael Jumper, Ula V. Jurkunas, Alon Kahana, Malik Y Kahook, Elliott Kanner, Kevin Kalwerisky, Henry J Kaplan, Ekaterini C Karatza, Randy Kardon, James A Katowitz, William R Katowitz, Melanie Kazlas, Kelly S Keefe, Lara Kelley, Charles J Kent, Kenneth R Kenyon, Bilal F Khan, Jemshed A Khan, Naheed W Khan, Peng Tee Khaw, Femida Kherani, Eva C Kim, Hee Joon Kim, Ivana K Kim, Jonathan W Kim, Rosa Y Kim, Stella K Kim, Tae-Im Kim, Christina M Klais, Stephen R Klapper, Barbara EK Klein, Guy Kleinmann, Thomas Klink, Dino D Klisovic, Stephen D Klyce, Tolga Kocaturk, Thomas Kohnen, Takeshi Kojima, Tobias Koller, David A Kostick, Joel A Kraut, Chandrasekharan Krishnan, Ronald R Krueger, Joseph H Krug, Sara Krupsky, Rachel W Kuchtey, Ramsay S Kurban, Paul A Kurz, JR Kuszak, Young H Kwon, Thad A Labbe, Deborah L Lam, Jeffrey C Lamkin, Kathleen A Lamping, Anne Marie Lane, Katherine A Lane, Keith J Lane, Jonathan H Lass, Mary G Lawrence, Andrew G Lee, Carol M Lee, Michael S Lee, Paul P Lee, William B Lee, Igal Leibovitch, Bradley N Lemke, Craig A Lemley, Andrea Leonardi, Simmons Lessell, Leonard A Levin, Grace A Levy-Clarke, Julie C Lew, Craig Lewis, Wei Li, Laurence S Lim, Lyndell L Lim, Wee-Kiak Lim, Grant T Liu, John I Loewenstein, McGregor N Lott, Jonathan C Lowry, David B Lyon, Robert E Lytle, Mathew MacCumber, Bonnie T Mackool, Nalini A Madiwale, Francis Mah, Martin A Mainster, Michael H Manning, Steven L Mansberger, Robert E Marc, Mellone Marchong, Dennis M Marcus, Julie A Mares, Brian P Marr, Carlos E Martinez, Robert W Massof, Yukihiro Matsumoto, Cynthia Mattox, Marlon Maus, Cathleen M McCabe, Steven A McCormick, Michael McCrakken, James P McCulley, John A McDermott, H Richard McDonald, Marguerite B McDonald, Peter J McDonnell, Robert McGillivray, Craig A McKeown, James McLaughlin, W Wynn McMullen, Shlomo Melamed, George Meligonis, Efstratios Mendrinos, Dale R Meyer, Catherine B Meyerle, William F Mieler, Michael Migliori, Martin C Mihm, Darlene Miller, David Miller, Joan W Miller, Neil R Miller, David M Mills, Monte D Mills, Tatyana Milman, Lylas Mogk, Marja Mogk, Jordi Monés, Robert Montes-Micó, Christie L Morse, Asa D Morton, Anne Moskowitz, Shizuo Mukai, A Linn Murphree, Robert P Murphy, Timothy G Murray, Philip I Murray, Karina Nagao, Jay Neitz, Maureen Neitz, Peter A Netland, Arthur H Neufeld, Nancy J Newman, Eugene WM Ng, Quan Dong Nguyen, Jerry Y Niederkorn, Robert J Noecker, Robert B Nussenblatt, Joan M O'Brien, Paul D O'Brien, Terrence P O'Brien, Denis O'Day, R Joseph Olk, Karl R Olsen, Sumru Onal, Yen Hoong Ooi, E Mitchel Opremcak, George Ousler, Randall R Ozment, Samuel Packer, Millicent L Palmer, George N Papaliodis, DJ John Park, David W Parke, Cameron F Parsa, M Andrew Parsons, Louis R Pasquale, Neha N Patel, Sayjal J Patel, Thomas D Patrianakos, James R Patrinely, Deborah Pavan-Langston, Eli Peli, Susan M Pepin, Victor L Perez, Juan J Pérez-Santonja, John R Perfect, Henry D Perry, Joram Piatigorsky, Dante Pieramici, Eric A Pierce, Roberto Pineda, Misha L Pless, Howard D Pomeranz, Constantin J Pournaras, William Power, Manvi Prakash, Anita G Prasad, Valerie Purvin, David A Quillen, Graham E Quinn, Melvin D Rabena, James L Rae, Michael B Raizman, Alessandro Randazzo, Narsing A Rao, Christopher J Rapuano, Sherman W Reeves, Carl D Regillo, Elias Reichel, Martin H Reinke, Douglas Rhee, Claudia U Richter, Joseph F Rizzo, Richard M Robb, Anja C Roden, I Rand Rodgers, Merlyn M Rodrigues, Yonina Ron, Geoffrey E Rose, Emanuel S Rosen, James T Rosenbaum, Perry Rosenthal, Strutha C Rouse, Barry W Rovner, Malgorzata Rozanowska, Michael P Rubin, Peter AD Rubin, Shimon Rumelt, Anil K Rustgi, Tina Rutar, Mark S Ruttum, Allan R Rutzen, Edward T Ryan, Alfredo A Sadun, José-Alain Sahel, Leorey Saligan, Sarwat Salim, John F Salmon, Diva R Salomão, David Sami, Michael A Sandberg, Virender S Sangwan, Maria A Saornil, Joseph W Sassani, Rony R Sayegh, Andrew P Schachat, Wiley A Schell, Amy C Schefler, Tina Scheufele, Vivian Schiedler, Gretchen Schneider, Alison Schroeder, Ronald A Schuchard, Joel S Schuman, Ivan R Schwab, Adrienne Scott, Ingrid U Scott, Marvin L Sears, Johanna M Seddon, Theo Seiler, Robert P Selkin, Richard D Semba, Irina Serbanescu, Briar Sexton, Tarek M Shaarawy, Peter Shah, Aron Shapiro, Savitri Sharma, Jean Shein, Debra J Shetlar, M Bruce Shields, Carol L Shields, Jerry A Shields, Bradford J Shingleton, John W Shore, Lesya M Shuba, Guy J Ben Simon, Richard J Simmons, Michael Simpson, Arun D Singh, Omah S Singh, Karen Sisley, Arthur J Sit, David Smerdon, William E Smiddy, Ronald E Smith, Terry J Smith, Neal G Snebold, Lucia Sobrin, John A Sorenson, Sarkis H Soukiasian, George L Spaeth, Richard F Spaide, Monika Srivastava, Sunil K Srivastava, Alexandros N Stangos, Tomy Starck, Walter J Stark, Joshua D Stein, Roger F Steinert, Leon Strauss, Barbara W Streeten, J Wayne Streilein, James D Strong, Ilene K Sugino, Eric B Suhler, Timothy J Sullivan, Jennifer K Sun, Janet S Sunness, Francis C Sutula, Nasreen A Syed, Christopher N Ta, Hidehiro Takei, Jonathan H Talamo, Richard R Tamesis, Madhura Tamhankar, Kristen J Tarbet, Michelle Tarver-Carr, Mark A Terry, Joseph M Thomas, Vance Thompson, Jennifer E Thorne, Matthew J Thurtell, David P Tingey, King W To, Faisal M Tobaigy, Michael J Tolentino, Melissa G Tong, Gail Torkildsen, Cynthia A Toth, Elias I Traboulsi, Michele Trucksis, James C Tsai, Julie H Tsai, David T Tse, Scheffer CG Tseng, Elmer Y Tu, Ira J Udell, Alejandra A Valenzuela, Russell N Van Gelder, Gregory P Van Stavern, Deborah K Vander Veen, Demetrios Vavvas, David H Verity, Paolo Vinciguerra, Paul F Vinger, Nicholas J Volpe, Werner Wackernagel, Sonal Desai Wadhwa, Michael D Wagoner, Nadia K Waheed, David S Walton, Martin Wand, Jie Jin Wang, Scott M Warden, Lennox Webb, David Weber, Daniel Wee, Corey B Westerfeld, Christopher T Westfall, Scott M Whitcup, Valerie A White, William L White, Jason Wickens, Janey L Wiggs, Jacob T Wilensky, Charles P Wilkinson, Patrick D Williams, David J Wilson, M Roy Wilson, Steven E Wilson, Jules Winokur, William J Wirostko, Gadi Wollstein, Albert Chak Ming Wong, Tien Y Wong, John J Woog, Michael Wride, Carolyn S Wu, Darrell WuDunn, Jean Yang, Lawrence A Yannuzzi, Michael J Yaremchuk, R Patrick Yeatts, Richard W Yee, Steven Yeh, Lucy HY Young, Jenny Y Yu, Beatrice YJT Yue, Charles M Zacks, Bruce M Zagelbaum, Maryam Zamani, Marco Zarbin, Leonidas Zografos, and Christopher I Zoumalan

Published
2008
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4. Patient preference regarding first-trimester aneuploidy risk assessment

Author

Laurence B. McCullough, Frank A. Chervenak, Stephen T. Chasen, Heather T. Gold, Geeta Sharma, and Abigail K. Alt

Subjects
Adult, medicine.medical_specialty, Down syndrome, Prenatal diagnosis, Truth Disclosure, Risk Assessment, Patient satisfaction, Pregnancy, Prenatal Diagnosis, Surveys and Questionnaires, Medicine, Humans, Prospective Studies, Risk factor, Prospective cohort study, business.industry, Obstetrics, Obstetrics and Gynecology, Middle Aged, medicine.disease, Aneuploidy, Pregnancy Trimester, First, Patient Satisfaction, Female, Down Syndrome, business, Risk assessment
Abstract

Objective We assessed patient views regarding disclosure of first-trimester Down syndrome risk assessment results compared with withholding results until a single, more accurate second-trimester screening result is available. Study design A prospective, institutional review board–approved, voluntary, anonymous survey was presented to patients with singleton pregnancies who were undergoing first-trimester nuchal translucency and biochemical screening at our institution. Options included immediate (sequential testing) or later disclosure (integrated testing). Descriptions and a comparison of the options were included in the survey. Results One hundred one women completed the questionnaires; 69.3% of the patients preferred sequential testing, compared with 30.7% of the patients who were either unsure or preferred integrated testing. Older patients and those patients with better background knowledge of screening tests preferred earlier disclosure of screening results (P = .035 and P = .026, respectively). Patients who preferred earlier disclosure also preferred termination of a Down syndrome pregnancy (P = .013). Conclusion Older patients and those patients with a better understanding of screening tests preferred immediate disclosure of first-trimester risk assessment results; these women were more likely to prefer to terminate an affected pregnancy.

Published
2005

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