Swipe om te navigeren naar een ander artikel
This paper was written by authors in their capacity as employees of the US Department of Health and Human Services (DHHS), but the views expressed in this paper do not necessarily represent those of their Institute, Agency, or Center of DHHS.
Many of the Institutes, Agencies and Centers that make up the US Department of Health and Human Services (DHHS) have recognized the need for better instrumentation in health outcomes research, and provide support, both internally and externally, for research utilizing advances in measurement theory and computer technology (informatics). In this paper, representatives from several DHHS agencies and institutes will discuss their need for better instruments within their discipline and describe current or future initiatives for exploring the benefits of these technologies. Together, the perspectives underscore the importance of developing valid, precise, and efficient measures to capture the full burden of disease and treatment on patients. Initiatives, like the Patient-Reported Outcomes Measurement Information System (PROMIS) to create health-related quality of life item banks, represent a trans-DHHS effort to develop a standard set of measures for informing decision making in clinical research, practice, and health policy.
Log in om toegang te krijgen
Met onderstaand(e) abonnement(en) heeft u direct toegang:
NIH Roadmap: Accelerating Medical Discovery to Improve Health [web site]. Retrieved November 27, 2006 from: http://www.nihroadmap.nih.gov..
Patient-Reported Outcomes Measurement Information System [web site]. Retrieved November 22, 2006 from: http://www.nihpromis.org
Lipscomb, J., Donaldson, M. S., & Hiatt, R. A. (2004). Cancer outcomes research and the arenas of application. JNCI Monographs, 33, 1–7. CrossRef
American Cancer Society. (2007). Cancer Facts & Figures 2007. Atlanta (GA): American Cancer Society.
National Institutes of Health State-of-the-Science Panel (2004). National Institutes of Health State-of-the-Science Conference Statement: Symptom management in cancer: pain, depression, and fatigue, July 15–17, 2002. Journal of the National Cancer Institute Monographs 32, 9–16.
Lipscomb, J., Gotay, C. C., & Snyder, C. F. (Eds.) (2005). Outcomes assessment in cancer: Measures, methods, and applications. Cambridge, UK: Cambridge University Press.
Gotay, C. C., Lipscomb, J., & Snyder, C. F. (2005). Reflections on COMWG findings and moving to the next phase. In J. Lipscomb, C. C. Gotay, & C. F. Snyder (Eds.), Outcomes assessment in cancer: Measures, methods, and applications (pp. 568–583). Cambridge, UK: Cambridge University Press
National Cancer Institute. The NCI Strategic Plan for Leading the Nation to Eliminate the Suffering and Death Due to Cancer. NIH Publication No. 06–5773, January 2006, Bethesda, MD, Retrieved January 30, 2007 from: http://www.strategicplan.nci.nih.gov/
National Cancer Institute and American Cancer Society co-sponsored conference: Patient-Reported Outcomes Assessment in Cancer Trials: Evaluating and Enhancing the Payoff to Decision Making [web site]. Retrieved November 22, 2006, from: http://www.outcomes.cancer.gov/publications/workshops/proact/
Outcomes Research Branch, National Cancer Institute [website]. Retrieved November 27, 2006, from: http://www.outcomes.cancer.gov
Ogden, C., Carol, M., & McDowell, M., et al. (2006). Prevalence of overweight and obesity in the United States 1999–2004. Journal of the American Medical Association, 295, 1540–1555. CrossRef
U.S. Department of Health and Human Services. (2001). The Surgeon General’s Call to Action to Prevent and Decrease Overweight and Obesity. [Rockville, MD]: U.S. Department of Health and Human Services, Public Health Service, Office of the Surgeon General. Available from: U.S. GPO, Washington.
U. S. Department of Health and Human Services, To Improve the Health and Wellness of Persons with Disabilities [website]. Washington, DC, Office on Disability. Retrieved January 18, 2006, from: http://www.hhs.gov/od
Fuhrer, M. J. (Ed.) (1997). Assessing Medical Rehabilitation Practices The Promise of Outcomes Research. Baltimore, MD: Paul H. Brookes Publishing Co.
Research Plan for the National Center for Medical Rehabilitation Research (1993). Bethesda, MD: NIH Publication No. 93–3509.
World Health Organization. (1980). International Classification of Impairments, Disabilities, and Handicaps. Geneva.
Brandt, E. N. Jr., & Pope, A. M. (Eds.) (1997). Enabling America: Assessing the role of rehabilitation science and engineering. Washington, DC: National Academy Press.
National Health Interview Survey. (2003). Summary Statistics for U.S. Adults, Appendix III, Table I.
National Health Interview Survey (2003). Summary Statistics for U.S. Adults, Appendix III, Table IV.
National Health Interview Survey (2004). Summary Health Statistics for U.S. Children, Appendix III, Table IV.
National Heart, Lung, and Blood Institute (2002). Sickle cell research for treatment and cure. Bethesda, MD: NIH Publication No. 02–5214.)
Centers for Disease Control and Prevention, U.S. DHHS [website]. Retrieved November 27, 2006 from: http://www.cdc.gov/ncbddd/hbd/hemophilia.htm/
Smith, H. C., Frye, R. L., & Piehler, J. M. (1983). Does coronary bypass surgery have a favorable influence on the qualify of life?. Cardiovascular Clinics, 13, 253–264. PubMed
National Heart, Lung, and Blood Institute. [website]. Workshop on Adults with Sickle Cell Diseases: Meeting Unmet Needs. Executive Summary and Recommendations. Retrieved November 27, 2006, from: http://www.nhlbi.nih.gov/meetings/scdmtg/execsum.htm/
Hispanic Community Health Study [website]. Retrieved February 2, 2007, from: http://www.cscc.unc.edu/hchs
The Health Measurement Research Group [website]. Retrieved February 2, 2007, from: http://www.healthmeasurement.org
Diener, E., & Seligman, M. E. P. (2004). Beyond money: Toward an economy of well-being. Psychological Science in the Public Interest, 5, 1–31. CrossRef
Mroczek, D. K., & Spiro, A. (2003). Modeling intraindividual change in personality traits: findings from the normative aging study. Journal of Gerontology B Psychological Science and Social Science, 58(3), 153–165.
Ryff, C. D., Singer, B. H., & Love, G. (2004). Positive health: connecting well-being with biology. Philosophical Transactions of the Royal Society of London. Series B. Biological Sciences, 359, 1383–1394. CrossRef
Resource Centers for Minority Aging Research [website]. Retrieved February 2, 2007, from: http://www.rcmar.ucla.edu/
Murray, C. J. L., & Lopez, A. D. (Eds.). (1996). The global burden of disease and injury series: A comprehensive assessment of mortality and disability from diseases, injuries, and risk factors in 1990 and projected to 2020 (Vol. 1). Cambridge, MA: Harvard School of Public Health on behalf of the World Health Organization and the World Bank, Harvard University Press.)
Spitzer, R. L., Williams, J. B. W., Gibbon, M. & First, M. B. (1992). The Structured Clinical Interview for DSM-III-R (SCID): I. history, rationale, and description. Archives of General Psychiatry, 49, 624–629. PubMed
National Institute of Mental Health. [website]. Program Announcement: Functional Assessment of People with Mental Disorders. Retrieved November 27, 2006 from: http://www.grants1.nih.gov/grants/guide/pa-files/PA-05-037.html/
National Institute of Neurological Disorders and Stroke. [website]. Retrieved November 27, 2006, from: http://www.ninds.nih.gov/
National Institutes of Health State-of-the-Science Conference Statement on Improving End-of-Life Care [website]. Retrieved November 27, 2006, from: http://www.consensus.nih.gov/2004/2004EndOfLifeCareSOS024html.htm/
Hays, R. D., Shaul, J. A., Williams, V.S., et al. (1999). Psychometric properties of the CAHPS 1.0 survey measures. Medical Care, 37(supplement), 22–31.
Hargreaves, J. L., Hays, R. D., & Cleary, P. D. (2003). Psychometric properties of the Consumer Assessment of Health Plans Study (CAHPS) 2.0 adult core survey. Health Services Research, 38, 1509–1527. CrossRef
Bender, R. H., & Garfinkel, S. A. (2001). Differences in the structure of CAHPS measures among the Medicare fee-for-service, Medicare managed care, and privately insured populations. Health Services Research, 36, 489–508. PubMed
Moher, D., Schachter, H. M., Mamaladze, V., et al. (2004). Quality of breast cancer care in women. Summary, Evidence Report/Technology Assessment No. 105. Rockville, MD: Agency for Healthcare Research and Quality Publication No. 04-E030–1.
Fleishman, J. A., & Lawrence, W. F. (2003). Demographic variation in SF-12 scores: True differences or differential item functioning. Medical Care, 41, III-75–III-86.
Agency for Healthcare Research and Quality. Medical Expenditure Panel Survey (MEPS). [website]. Retrieved February 2, 2007, from: http://www.meps.ahrq.gov/
Food and Drug Administration, U. S. Department of Health and Human Services. Challenge and opportunity on the critical path to new medical products. Retrieved March 11, 2004, from: http://www.fda.gov/oc/initiatives/criticalpath/whitepaper.html/
Food and Drug Administration. U. S. Department of Health and Human Services. Guidance for industry. Patient-reported outcome measures: Use in medical product development to support labeling claims. Retrieved February 24, 2006, from: http://www.fda.gov/cder/guidance/5460dft.pdf/
Bren, L. (2006). The importance of patient-reported outcomes... It’s all about the patients. FDA Consumer, 40, 27–32.
Dueck, A., Halyard, M. Y., Frost, M. H., & Sloan, J. A. (2006). Meeting on the FDA Draft Guidance on Patient-Reported Outcomes. Patient Reported Outcomes Newsletter, 36, 1–4.
- Enhancing measurement in health outcomes research supported by Agencies within the US Department of Health and Human Services
Bryce B. Reeve
Laurie B. Burke
Steven B. Clauser
Lisa J. Colpe
Jeffrey W. Elias
Ann A. Hohmann
Wendy L. Johnson-Taylor
Claudia S. Moy
Louis A. Quatrano
William T. Riley
Barbara A. Smothers
Ellen M. Werner
- Springer Netherlands