5 results
OP58 Challenges In Maintaining Up To Date Health Technology Assessments in Rare Diseases: Lessons From Fabry Disease In Australia
- Kathleen Nicholls, Charles Denaro, Michel Tchan, Carolyn Ellaway, Drago Bratkovic, Hazel Palmer, Sheridan Campbell, Megan Fookes, Mark Thomas
-
- Journal:
- International Journal of Technology Assessment in Health Care / Volume 39 / Issue S1 / December 2023
- Published online by Cambridge University Press:
- 14 December 2023, p. S16
-
- Article
-
- You have access Access
- Export citation
-
Introduction
Fabry disease is a rare, inherited X-linked lysosomal storage disease characterized by a wide spectrum of heterogeneously progressive clinical phenotypes, and which results in progressive kidney disease, cardiomyopathy, cerebrovascular disease, and reduced life expectancy. Disease-specific therapy aims to improve symptoms, stabilize current disease and delay progression. In Australia treatment access requires that patients meet pre-specified criteria, which have been in place for more than 15 years. Patient questions prompted the patient organization, Fabry Australia, to investigate why these criteria had remained unchanged despite significant progress in the understanding and management of Fabry disease.
MethodsA panel comprising two members of Fabry Australia and its Medical Advisory Committee conducted a review of the literature. The aim of this was to inform the clinical quality of the Australian treatment access criteria with reference to international guidelines and contemporary data. The findings from the literature were applied to develop consensus recommendations for classification and Fabry-specific treatment initiation criteria in diagnosed patients.
ResultsEvidence supports earlier treatment with reduced barriers to access in some circumstances. Australian access criteria are misaligned with this. They do not distinguish between classical and non-classical Fabry phenotypes, neglect the impact of quality of life and gastrointestinal symptoms, and impose symptom-severity related criteria, which may lead to unnecessary treatment initiation delay. An updated framework is presented. It differentiates phenotypes, facilitates more timely access to Fabry-specific treatment for classical males, and supports relevant organ involvement criteria in classical females and patients with non-classical disease.
ConclusionsA well-performing health technology assessment system facilitates patient access to cost-effective treatments that improve health outcomes. Timely treatment initiation is important to avoid irreversible organ damage in Fabry patients. Patients’ questions about out-dated access criteria has prompted research and uncovered barriers that are no longer clinically valid. The perspectives of the patient as a stakeholder in their disease management should not be overlooked when assessing the value of health technologies in the rare disease setting.
Standardized Infection Ratio for Surgical Site Infection after Colon Surgery: Discord in Models Measuring Healthcare Quality
- Raymond Chinn, Jason M. Lempp, Susan S. Huang, Rekha Murthy, Francesca J. Torriani, Jacqueline Daley, Elaine Dekker, Barbara Goss-Bottorff, Wendy Kaler, Karen Meyer, Frank Myers, Amy Nichols, Kathleen Quan, David Birnbaum
-
- Journal:
- Infection Control & Hospital Epidemiology / Volume 37 / Issue 11 / November 2016
- Published online by Cambridge University Press:
- 30 August 2016, pp. 1378-1382
- Print publication:
- November 2016
-
- Article
- Export citation
-
The government publishes 3 different public report surgical site infection (SSI) metrics, all called standardized infection ratios (SIRs), that impact perceived hospital quality. We conducted a non-random cross-sectional observational pilot study of 20 California hospitals that voluntarily submitted colon surgery and SSI data. Discordant SIR values, leading to contradictory conclusions, occurred in 35% of these hospitals.
Infect Control Hosp Epidemiol 2016;1–5
Discord among Performance Measures for Central Line—Associated Bloodstream Infection
- David M. Tehrani, Dana Russell, Jennifer Brown, Kim Boynton-Delahanty, Kathleen Quan, Laurel Gibbs, Geri Braddock, Teresa Zaroda, Marsha Koopman, Deborah Thompson, Amy Nichols, Eric Cui, Catherine Liu, Stuart Cohen, Zachary Rubin, David Pegues, Francesca Torriani, Rupak Datta, Susan S. Huang, for the University of California Healthcare Epidemiology Collaborative
-
- Journal:
- Infection Control & Hospital Epidemiology / Volume 34 / Issue 2 / February 2013
- Published online by Cambridge University Press:
- 02 January 2015, pp. 176-183
- Print publication:
- February 2013
-
- Article
- Export citation
-
Background.
Central line-associated bloodstream infection (CLABSI) is a national target for mandatory reporting and a Centers for Medicare and Medicaid Services target for value-based purchasing. Differences in chart review versus claims-based metrics used by national agencies and groups raise concerns about the validity of these measures.
Objective.Evaluate consistency and reasons for discordance among chart review and claims-based CLABSI events.
Methods.We conducted 2 multicenter retrospective cohort studies within 6 academic institutions. A total of 150 consecutive patients were identified with CLABSI on the basis of National Healthcare Safety Network (NHSN) criteria (NHSN cohort), and an additional 150 consecutive patients were identified with CLABSI on the basis of claims codes (claims cohort). Ail events had full-text medical record reviews and were identified as concordant or discordant with the other metric.
Results.In the NHSN cohort, there were 152 CLABSIs among 150 patients, and 73.0% of these cases were discordant with claims data. Common reasons for the lack of associated claims codes included coding omission and lack of physician documentation of bacteremia cause. In the claims cohort, there were 150 CLABSIs among 150 patients, and 65.3% of these cases were discordant with NHSN criteria. Common reasons for the lack of NHSN reporting were identification of non-CLABSI with bacteremia meeting Centers for Disease Control and Prevention (CDC) criteria for an alternative infection source.
Conclusion.Substantial discordance between NHSN and claims-based CLABSI indicators persists. Compared with standardized CDC chart review criteria, claims data often had both coding omissions and misclassification of non-CLABSI infections as CLABSI. Additionally, claims did not identify any additional CLABSIs for CDC reporting. NHSN criteria are a more consistent interhospital standard for CLABSI reporting.
Chapter 3 - Changes in Climate Extremes and their Impacts on the Natural Physical Environment
- from Section III
-
- By Sonia I. Seneviratne, Neville Nicholls, David Easterling, Clare M. Goodess, Shinjiro Kanae, James Kossin, Yali Luo, Jose Marengo, Kathleen McInnes, Mohammad Rahimi, Markus Reichstein, Asgeir Sorteberg, Carolina Vera, Xuebin Zhang, Matilde Rusticucci, Vladimir Semenov, Lisa V. Alexander, Simon Allen, Gerardo Benito, Tereza Cavazos, John Clague, Declan Conway, Paul M. Della-Marta, Markus Gerber, Sunling Gong, B. N. Goswami, Mark Hemer, Christian Huggel, Bart van den Hurk, Viatcheslav V. Kharin, Akio Kitoh, Albert M.G. Klein Tank, Guilong Li, Simon Mason, William McGuire, Geert Jan van Oldenborgh, Boris Orlowsky, Sharon Smith, Wassila Thiaw, Adonis Velegrakis, Pascal Yiou, Tingjun Zhang, Tianjun Zhou, Francis W. Zwiers
- Edited by Christopher B. Field, Vicente Barros, Thomas F. Stocker, Qin Dahe
-
- Book:
- Managing the Risks of Extreme Events and Disasters to Advance Climate Change Adaptation
- Published online:
- 05 August 2012
- Print publication:
- 28 May 2012, pp 109-230
-
- Chapter
- Export citation
-
Summary
Executive Summary
This chapter addresses changes in weather and climate events relevant to extreme impacts and disasters. An extreme (weather or climate) event is generally defined as the occurrence of a value of a weather or climate variable above (or below) a threshold value near the upper (or lower) ends (‘tails’) of the range of observed values of the variable. Some climate extremes (e.g., droughts, floods) may be the result of an accumulation of weather or climate events that are, individually, not extreme themselves (though their accumulation is extreme). As well, weather or climate events, even if not extreme in a statistical sense, can still lead to extreme conditions or impacts, either by crossing a critical threshold in a social, ecological, or physical system, or by occurring simultaneously with other events. A weather system such as a tropical cyclone can have an extreme impact, depending on where and when it approaches landfall, even if the specific cyclone is not extreme relative to other tropical cyclones. Conversely, not all extremes necessarily lead to serious impacts. [3.1]
Many weather and climate extremes are the result of natural climate variability (including phenomena such as El Niño), and natural decadal or multi-decadal variations in the climate provide the backdrop for anthropogenic climate changes. Even if there were no anthropogenic changes in climate, a wide variety of natural weather and climate extremes would still occur. [3.1]
A changing climate leads to changes in the frequency, intensity, spatial extent, duration, and timing of weather and climate extremes, and can result in unprecedented extremes. Changes in extremes can also be directly related to changes in mean climate, because mean future conditions in some variables are projected to lie within the tails of present-day conditions. Nevertheless, changes in extremes of a climate or weather variable are not always related in a simple way to changes in the mean of the same variable, and in some cases can be of opposite sign to a change in the mean of the variable. Changes in phenomena such as the El Nino-Southern Oscillation or monsoons could affect the frequency and intensity of extremes in several regions simultaneously. [3.1]
Looking Backward, Looking Forward: MLA Members Speak
- April Alliston, Elizabeth Ammons, Jean Arnold, Nina Baym, Sandra L. Beckett, Peter G. Beidler, Roger A. Berger, Sandra Bermann, J.J. Wilson, Troy Boone, Alison Booth, Wayne C. Booth, James Phelan, Marie Borroff, Ihab Hassan, Ulrich Weisstein, Zack Bowen, Jill Campbell, Dan Campion, Jay Caplan, Maurice Charney, Beverly Lyon Clark, Robert A. Colby, Thomas C. Coleman III, Nicole Cooley, Richard Dellamora, Morris Dickstein, Terrell Dixon, Emory Elliott, Caryl Emerson, Ann W. Engar, Lars Engle, Kai Hammermeister, N. N. Feltes, Mary Anne Ferguson, Annie Finch, Shelley Fisher Fishkin, Jerry Aline Flieger, Norman Friedman, Rosemarie Garland-Thomson, Sandra M. Gilbert, Laurie Grobman, George Guida, Liselotte Gumpel, R. K. Gupta, Florence Howe, Cathy L. Jrade, Richard A. Kaye, Calhoun Winton, Murray Krieger, Robert Langbaum, Richard A. Lanham, Marilee Lindemann, Paul Michael Lützeler, Thomas J. Lynn, Juliet Flower MacCannell, Michelle A. Massé, Irving Massey, Georges May, Christian W. Hallstein, Gita May, Lucy McDiarmid, Ellen Messer-Davidow, Koritha Mitchell, Robin Smiles, Kenyatta Albeny, George Monteiro, Joel Myerson, Alan Nadel, Ashton Nichols, Jeffrey Nishimura, Neal Oxenhandler, David Palumbo-Liu, Vincent P. Pecora, David Porter, Nancy Potter, Ronald C. Rosbottom, Elias L. Rivers, Gerhard F. Strasser, J. L. Styan, Marianna De Marco Torgovnick, Gary Totten, David van Leer, Asha Varadharajan, Orrin N. C. Wang, Sharon Willis, Louise E. Wright, Donald A. Yates, Takayuki Yokota-Murakami, Richard E. Zeikowitz, Angelika Bammer, Dale Bauer, Karl Beckson, Betsy A. Bowen, Stacey Donohue, Sheila Emerson, Gwendolyn Audrey Foster, Jay L. Halio, Karl Kroeber, Terence Hawkes, William B. Hunter, Mary Jambus, Willard F. King, Nancy K. Miller, Jody Norton, Ann Pellegrini, S. P. Rosenbaum, Lorie Roth, Robert Scholes, Joanne Shattock, Rosemary T. VanArsdel, Alfred Bendixen, Alarma Kathleen Brown, Michael J. Kiskis, Debra A. Castillo, Rey Chow, John F. Crossen, Robert F. Fleissner, Regenia Gagnier, Nicholas Howe, M. Thomas Inge, Frank Mehring, Hyungji Park, Jahan Ramazani, Kenneth M. Roemer, Deborah D. Rogers, A. LaVonne Brown Ruoff, Regina M. Schwartz, John T. Shawcross, Brenda R. Silver, Andrew von Hendy, Virginia Wright Wexman, Britta Zangen, A. Owen Aldridge, Paula R. Backscheider, Roland Bartel, E. M. Forster, Milton Birnbaum, Jonathan Bishop, Crystal Downing, Frank H. Ellis, Roberto Forns-Broggi, James R. Giles, Mary E. Giles, Susan Blair Green, Madelyn Gutwirth, Constance B. Hieatt, Titi Adepitan, Edgar C. Knowlton, Jr., Emanuel Mussman, Sally Todd Nelson, Robert O. Preyer, David Diego Rodriguez, Guy Stern, James Thorpe, Robert J. Wilson, Rebecca S. Beal, Joyce Simutis, Betsy Bowden, Sara Cooper, Wheeler Winston Dixon, Tarek el Ariss, Richard Jewell, John W. Kronik, Wendy Martin, Stuart Y. McDougal, Hugo Méndez-Ramírez, Ivy Schweitzer, Armand E. Singer, G. Thomas Tanselle, Tom Bishop, Mary Ann Caws, Marcel Gutwirth, Christophe Ippolito, Lawrence D. Kritzman, James Longenbach, Tim McCracken, Wolfe S. Molitor, Diane Quantic, Gregory Rabassa, Ellen M. Tsagaris, Anthony C. Yu, Betty Jean Craige, Wendell V. Harris, J. Hillis Miller, Jesse G. Swan, Helene Zimmer-Loew, Peter Berek, James Chandler, Hanna K. Charney, Philip Cohen, Judith Fetterley, Herbert Lindenberger, Julia Reinhard Lupton, Maximillian E. Novak, Richard Ohmann, Marjorie Perloff, Mark Reynolds, James Sledd, Harriet Turner, Marie Umeh, Flavia Aloya, Regina Barreca, Konrad Bieber, Ellis Hanson, William J. Hyde, Holly A. Laird, David Leverenz, Allen Michie, J. Wesley Miller, Marvin Rosenberg, Daniel R. Schwarz, Elizabeth Welt Trahan, Jean Fagan Yellin
-
- Journal:
- PMLA / Publications of the Modern Language Association of America / Volume 115 / Issue 7 / December 2000
- Published online by Cambridge University Press:
- 23 October 2020, pp. 1986-2078
- Print publication:
- December 2000
-
- Article
- Export citation