Skip to main content
Top
Gepubliceerd in: Quality of Life Research 1/2007

01-08-2007 | Original Paper

Enhancing measurement in health outcomes research supported by Agencies within the US Department of Health and Human Services

Auteurs: Bryce B. Reeve, Laurie B. Burke, Yen-pin Chiang, Steven B. Clauser, Lisa J. Colpe, Jeffrey W. Elias, John Fleishman, Ann A. Hohmann, Wendy L. Johnson-Taylor, William Lawrence, Claudia S. Moy, Louis A. Quatrano, William T. Riley, Barbara A. Smothers, Ellen M. Werner

Gepubliceerd in: Quality of Life Research | bijlage 1/2007

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Abstract

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.
Literatuur
3.
go back to reference Lipscomb, J., Donaldson, M. S., & Hiatt, R. A. (2004). Cancer outcomes research and the arenas of application. JNCI Monographs, 33, 1–7.CrossRef Lipscomb, J., Donaldson, M. S., & Hiatt, R. A. (2004). Cancer outcomes research and the arenas of application. JNCI Monographs, 33, 1–7.CrossRef
4.
go back to reference American Cancer Society. (2007). Cancer Facts & Figures 2007. Atlanta (GA): American Cancer Society. American Cancer Society. (2007). Cancer Facts & Figures 2007. Atlanta (GA): American Cancer Society.
5.
go back to reference 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. 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.
6.
go back to reference Lipscomb, J., Gotay, C. C., & Snyder, C. F. (Eds.) (2005). Outcomes assessment in cancer: Measures, methods, and applications. Cambridge, UK: Cambridge University Press. Lipscomb, J., Gotay, C. C., & Snyder, C. F. (Eds.) (2005). Outcomes assessment in cancer: Measures, methods, and applications. Cambridge, UK: Cambridge University Press.
7.
go back to reference 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 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
11.
go back to reference 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 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
12.
go back to reference Bonow, R. O. (2003). The challenge of balancing scientific discovery and translation. Circulation, 107(3), 358–362.PubMedCrossRef Bonow, R. O. (2003). The challenge of balancing scientific discovery and translation. Circulation, 107(3), 358–362.PubMedCrossRef
13.
go back to reference Hill, J. O., & Peters, J. C. (1998). Environmental contributions to the obesity epidemic. Science, 280, 1371–1374.PubMedCrossRef Hill, J. O., & Peters, J. C. (1998). Environmental contributions to the obesity epidemic. Science, 280, 1371–1374.PubMedCrossRef
14.
go back to reference Evans, W. D., Finkelstein, E. A., Kamerow, D. B., & Renaud, J. M. (2005). Public perceptions of childhood obesity. American Journal of Preventive Medicine, 28(1), 26–32.PubMedCrossRef Evans, W. D., Finkelstein, E. A., Kamerow, D. B., & Renaud, J. M. (2005). Public perceptions of childhood obesity. American Journal of Preventive Medicine, 28(1), 26–32.PubMedCrossRef
15.
go back to reference 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. (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.
16.
go back to reference Wee, C., Phillips, R., & Legedza, A., et al. (2005). Health care expenditures association with overweight and obesity among US adults: Importance of age and race. American Journal of Public Health, 95, 159–165.PubMedCrossRef Wee, C., Phillips, R., & Legedza, A., et al. (2005). Health care expenditures association with overweight and obesity among US adults: Importance of age and race. American Journal of Public Health, 95, 159–165.PubMedCrossRef
17.
go back to reference 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 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
18.
go back to reference Fuhrer, M. J. (Ed.) (1997). Assessing Medical Rehabilitation Practices The Promise of Outcomes Research. Baltimore, MD: Paul H. Brookes Publishing Co. Fuhrer, M. J. (Ed.) (1997). Assessing Medical Rehabilitation Practices The Promise of Outcomes Research. Baltimore, MD: Paul H. Brookes Publishing Co.
19.
go back to reference Research Plan for the National Center for Medical Rehabilitation Research (1993). Bethesda, MD: NIH Publication No. 93–3509. Research Plan for the National Center for Medical Rehabilitation Research (1993). Bethesda, MD: NIH Publication No. 93–3509.
20.
go back to reference World Health Organization. (1980). International Classification of Impairments, Disabilities, and Handicaps. Geneva. World Health Organization. (1980). International Classification of Impairments, Disabilities, and Handicaps. Geneva.
21.
go back to reference Brandt, E. N. Jr., & Pope, A. M. (Eds.) (1997). Enabling America: Assessing the role of rehabilitation science and engineering. Washington, DC: National Academy Press. Brandt, E. N. Jr., & Pope, A. M. (Eds.) (1997). Enabling America: Assessing the role of rehabilitation science and engineering. Washington, DC: National Academy Press.
22.
go back to reference Peterson, C. M., & Harvath, L. (2004). Current and future commitment to hematology research. Hematology/Oncology Clinics of North America, 18, 1215–1234.PubMedCrossRef Peterson, C. M., & Harvath, L. (2004). Current and future commitment to hematology research. Hematology/Oncology Clinics of North America, 18, 1215–1234.PubMedCrossRef
23.
go back to reference 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 I.
24.
go back to reference National Health Interview Survey (2003). Summary Statistics for U.S. Adults, Appendix III, Table IV. National Health Interview Survey (2003). Summary Statistics for U.S. Adults, Appendix III, Table IV.
25.
go back to reference National Health Interview Survey (2004). Summary Health Statistics for U.S. Children, Appendix III, Table IV. National Health Interview Survey (2004). Summary Health Statistics for U.S. Children, Appendix III, Table IV.
26.
go back to reference National Heart, Lung, and Blood Institute (2002). Sickle cell research for treatment and cure. Bethesda, MD: NIH Publication No. 02–5214.) National Heart, Lung, and Blood Institute (2002). Sickle cell research for treatment and cure. Bethesda, MD: NIH Publication No. 02–5214.)
28.
go back to reference 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 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
29.
go back to reference Heaton, R. K., Grant, I., McSweeny, A. J., Adams, K. M. & Petty, T. L. (1983). Psychological effects of continuous and nocturnal oxygen therapy in hypoxemic chronic obstructive pulmonary disease. Archives of Internal Medicine, 143(1), 1941–1947.PubMedCrossRef Heaton, R. K., Grant, I., McSweeny, A. J., Adams, K. M. & Petty, T. L. (1983). Psychological effects of continuous and nocturnal oxygen therapy in hypoxemic chronic obstructive pulmonary disease. Archives of Internal Medicine, 143(1), 1941–1947.PubMedCrossRef
33.
go back to reference 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 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
34.
go back to reference 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. 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.
35.
go back to reference 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 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
36.
go back to reference Kahneman, D., Krueger, A. B., Schkade, D. A., Schwarz, N., & Stone, A. A. (2004). A survey method for characterizing daily life experience: the day reconstruction method. Science, 306, 1776–1780.PubMedCrossRef Kahneman, D., Krueger, A. B., Schkade, D. A., Schwarz, N., & Stone, A. A. (2004). A survey method for characterizing daily life experience: the day reconstruction method. Science, 306, 1776–1780.PubMedCrossRef
38.
go back to reference 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.) 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.)
39.
go back to reference 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 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
40.
go back to reference Aggen, S. H., Neale, M. C., & Kendler, K. S. (2005). DSM criteria for major depression: Evaluating symptom patterns using latent-trait item response models. Psychological Medicine, 35, 475–487.PubMedCrossRef Aggen, S. H., Neale, M. C., & Kendler, K. S. (2005). DSM criteria for major depression: Evaluating symptom patterns using latent-trait item response models. Psychological Medicine, 35, 475–487.PubMedCrossRef
41.
go back to reference Kraemer, H. C., Noda, A., & O’Hara, R. (2004). Categorical versus dimensional approaches to diagnosis: Methodological challenges. Journal of Psychiatric Research, 38, 17–25.PubMedCrossRef Kraemer, H. C., Noda, A., & O’Hara, R. (2004). Categorical versus dimensional approaches to diagnosis: Methodological challenges. Journal of Psychiatric Research, 38, 17–25.PubMedCrossRef
42.
go back to reference Kupfer, D. J. (2005). Dimensional models for research and diagnosis: A current dilemma. Journal of Abnormal Psychology, 114, 557–559.PubMedCrossRef Kupfer, D. J. (2005). Dimensional models for research and diagnosis: A current dilemma. Journal of Abnormal Psychology, 114, 557–559.PubMedCrossRef
43.
go back to reference Evans, D. L., Charney, D. S., & Lewis, L. et al. (2005). Mood disorders in the medically ill: Scientific review and recommendations. Biological Psychiatry, 58, 175–189.PubMedCrossRef Evans, D. L., Charney, D. S., & Lewis, L. et al. (2005). Mood disorders in the medically ill: Scientific review and recommendations. Biological Psychiatry, 58, 175–189.PubMedCrossRef
44.
go back to reference Green, M. F., Nuechterlein, K. H., & Gold, J. M., et al. (2004). Approaching a consensus cognitive battery for clinical trials in schizophrenia: The NIMH-MATRICS Conference to select cognitive domains and test criteria. Biological Psychiatry, 56, 301–307.PubMedCrossRef Green, M. F., Nuechterlein, K. H., & Gold, J. M., et al. (2004). Approaching a consensus cognitive battery for clinical trials in schizophrenia: The NIMH-MATRICS Conference to select cognitive domains and test criteria. Biological Psychiatry, 56, 301–307.PubMedCrossRef
48.
go back to reference 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. 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.
49.
go back to reference Marshall, G. N., Morales, L. S., & Elliott, M., et al. (2001). Confirmatory factor analysis of the Consumer Assessment of Health Plans Study (CAHPS) 1.0 core survey. Psychological Assessment, 13, 216–229.PubMedCrossRef Marshall, G. N., Morales, L. S., & Elliott, M., et al. (2001). Confirmatory factor analysis of the Consumer Assessment of Health Plans Study (CAHPS) 1.0 core survey. Psychological Assessment, 13, 216–229.PubMedCrossRef
50.
go back to reference 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 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
51.
go back to reference 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 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
52.
go back to reference Hays, R. D., Brown, J., Brown, L. U., Spritzer, K. L., & Crall, J. J. (2006). Classical test theory and item response theory analyses of multi-item scales assessing parents’ perceptions of their children’s dental care. Medical Care, 44(11 suppl. 3), S60–S68.PubMedCrossRef Hays, R. D., Brown, J., Brown, L. U., Spritzer, K. L., & Crall, J. J. (2006). Classical test theory and item response theory analyses of multi-item scales assessing parents’ perceptions of their children’s dental care. Medical Care, 44(11 suppl. 3), S60–S68.PubMedCrossRef
53.
go back to reference 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. 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.
54.
go back to reference 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. 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.
58.
go back to reference Bren, L. (2006). The importance of patient-reported outcomes... It’s all about the patients. FDA Consumer, 40, 27–32. Bren, L. (2006). The importance of patient-reported outcomes... It’s all about the patients. FDA Consumer, 40, 27–32.
59.
go back to reference 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. 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.
60.
Metagegevens
Titel
Enhancing measurement in health outcomes research supported by Agencies within the US Department of Health and Human Services
Auteurs
Bryce B. Reeve
Laurie B. Burke
Yen-pin Chiang
Steven B. Clauser
Lisa J. Colpe
Jeffrey W. Elias
John Fleishman
Ann A. Hohmann
Wendy L. Johnson-Taylor
William Lawrence
Claudia S. Moy
Louis A. Quatrano
William T. Riley
Barbara A. Smothers
Ellen M. Werner
Publicatiedatum
01-08-2007
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave bijlage 1/2007
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-007-9190-8

Andere artikelen bijlage 1/2007

Quality of Life Research 1/2007 Naar de uitgave