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Gepubliceerd in: Quality of Life Research 1/2007

01-08-2007

Patient-reported outcomes measurement and management with innovative methodologies and technologies

Auteur: Chih-Hung Chang

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

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Abstract

Successful integration of modern psychometrics and advanced informatics in patient-reported outcomes (PRO) measurement and management can potentially maximize the value of health outcomes research and optimize the delivery of quality patient care. Unlike the traditional labor-intensive paper-and-pencil data collection method, item response theory-based computerized adaptive testing methodologies coupled with novel technologies provide an integrated environment to collect, analyze and present ready-to-use PRO data for informed and shared decision-making. This article describes the needs, challenges and solutions for accurate, efficient and cost-effective PRO data acquisition and dissemination means in order to provide critical and timely PRO information necessary to actively support and enhance routine patient care in busy clinical settings.
Literatuur
1.
go back to reference Patrick, D. L., & Chiang, Y. P. (2000). Measurement of health outcomes in treatment effectiveness evaluations: conceptual and methodological challenges. Medical Care, 38(9 Suppl), II14–II25.PubMed Patrick, D. L., & Chiang, Y. P. (2000). Measurement of health outcomes in treatment effectiveness evaluations: conceptual and methodological challenges. Medical Care, 38(9 Suppl), II14–II25.PubMed
2.
go back to reference McHorney, C. A. (1997). Generic health measurement: past accomplishments and a measurement paradigm for the 21st century. Annals of Internal Medicine, 127(8_Part_2), 743–750.PubMed McHorney, C. A. (1997). Generic health measurement: past accomplishments and a measurement paradigm for the 21st century. Annals of Internal Medicine, 127(8_Part_2), 743–750.PubMed
3.
go back to reference Donaldson, M. S. (2004). Taking stock of health-related quality-of-life measurement in oncology practice in the United States. Journal of National Cancer Institute. Monographs, 33, 155–167.CrossRef Donaldson, M. S. (2004). Taking stock of health-related quality-of-life measurement in oncology practice in the United States. Journal of National Cancer Institute. Monographs, 33, 155–167.CrossRef
4.
go back to reference White, E. B. (1998). Outcomes: essential information for clinical decision support: an interview with Ellen B. White. Interview by Melinda L. Orlando. Journal of Health Care Finance, 24(3), 71–81.PubMed White, E. B. (1998). Outcomes: essential information for clinical decision support: an interview with Ellen B. White. Interview by Melinda L. Orlando. Journal of Health Care Finance, 24(3), 71–81.PubMed
5.
go back to reference Ware, J. E. Jr. (2003). Conceptualization and measurement of health-related quality of life: comments on an evolving field. Archives of Physical Medicine and Rehabilitation, 84(4 Suppl 2), S43–S51.PubMedCrossRef Ware, J. E. Jr. (2003). Conceptualization and measurement of health-related quality of life: comments on an evolving field. Archives of Physical Medicine and Rehabilitation, 84(4 Suppl 2), S43–S51.PubMedCrossRef
6.
go back to reference Emery, M. P., Perrier, L. L., & Acquadro, C. (2005). Patient-reported outcome and quality of life instruments database (PROQOLID): frequently asked questions. Health and Quality of Life Outcomes, 3, 12.PubMedCrossRef Emery, M. P., Perrier, L. L., & Acquadro, C. (2005). Patient-reported outcome and quality of life instruments database (PROQOLID): frequently asked questions. Health and Quality of Life Outcomes, 3, 12.PubMedCrossRef
7.
go back to reference US Department of Health and Human Services FDA Center for Drug Evaluation and Research (2006) US Department of Health and Human Services FDA Center for Biologics Evaluation and Research, US Department of Health and Human Services FDA Center for Devices and Radiological Health. Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims: draft guidance. Health and Quality of Life Outcomes, 4(1), 79. US Department of Health and Human Services FDA Center for Drug Evaluation and Research (2006) US Department of Health and Human Services FDA Center for Biologics Evaluation and Research, US Department of Health and Human Services FDA Center for Devices and Radiological Health. Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims: draft guidance. Health and Quality of Life Outcomes, 4(1), 79.
8.
go back to reference Bradley, C. (2006). Feedback on the FDA’s February 2006 draft guidance on patient reported outcome (PRO) measures from a developer of PRO measures. Health and Quality of Life Outcomes, 4, 78.PubMedCrossRef Bradley, C. (2006). Feedback on the FDA’s February 2006 draft guidance on patient reported outcome (PRO) measures from a developer of PRO measures. Health and Quality of Life Outcomes, 4, 78.PubMedCrossRef
9.
go back to reference Willke, R. J., Burke, L. B., & Erickson, P. (2004). Measuring treatment impact: a review of patient-reported outcomes and other efficacy endpoints in approved product labels. Controlled Clinical Trials, 25(6), 535–552.PubMedCrossRef Willke, R. J., Burke, L. B., & Erickson, P. (2004). Measuring treatment impact: a review of patient-reported outcomes and other efficacy endpoints in approved product labels. Controlled Clinical Trials, 25(6), 535–552.PubMedCrossRef
10.
go back to reference Higginson, I. J., & Carr, A. J. (2001). Measuring quality of life: using quality of life measures in the clinical setting. BMJ, 322(7297), 1297–1300.PubMedCrossRef Higginson, I. J., & Carr, A. J. (2001). Measuring quality of life: using quality of life measures in the clinical setting. BMJ, 322(7297), 1297–1300.PubMedCrossRef
11.
go back to reference Jacobsen, P. B., Davis, K., & Cella, D. (2002). Assessing quality of life in research and clinical practice. Oncology (Williston Park), 16(9 Suppl 10), 133–139. Jacobsen, P. B., Davis, K., & Cella, D. (2002). Assessing quality of life in research and clinical practice. Oncology (Williston Park), 16(9 Suppl 10), 133–139.
12.
go back to reference Morris, J., Perez, D., & McNoe, B. (1998). The use of quality of life data in clinical practice. Quality of Life Research, 7(1), 85–91.PubMedCrossRef Morris, J., Perez, D., & McNoe, B. (1998). The use of quality of life data in clinical practice. Quality of Life Research, 7(1), 85–91.PubMedCrossRef
13.
go back to reference Bezjak, A., Ng, P., Taylor, K., MacDonald, K., & Depetrillo, A. D. (1997). A preliminary survey of oncologists’ perceptions of quality of life information. Psychooncology, 6(2), 107–113.PubMedCrossRef Bezjak, A., Ng, P., Taylor, K., MacDonald, K., & Depetrillo, A. D. (1997). A preliminary survey of oncologists’ perceptions of quality of life information. Psychooncology, 6(2), 107–113.PubMedCrossRef
14.
go back to reference Davis, K., & Cella, D. (2002). Assessing quality of life in oncology clinical practice: a review of barriers and critical success factors. Journal of Clinical Outcomes Management, 9, 327–332. Davis, K., & Cella, D. (2002). Assessing quality of life in oncology clinical practice: a review of barriers and critical success factors. Journal of Clinical Outcomes Management, 9, 327–332.
15.
go back to reference Ruta, D., Coutts, A., & Abdalla, M., et al. (1995). Feasibility of monitoring patient based health outcomes in a routine hospital setting. Quality of Health Care, 4(3), 161–165.CrossRef Ruta, D., Coutts, A., & Abdalla, M., et al. (1995). Feasibility of monitoring patient based health outcomes in a routine hospital setting. Quality of Health Care, 4(3), 161–165.CrossRef
16.
go back to reference Deyo, R. A., & Patrick, D. L. (1989). Barriers to the use of health status measures in clinical investigation, patient care, and policy research. Medical Care, 27(3 Suppl), S254–S268.PubMedCrossRef Deyo, R. A., & Patrick, D. L. (1989). Barriers to the use of health status measures in clinical investigation, patient care, and policy research. Medical Care, 27(3 Suppl), S254–S268.PubMedCrossRef
17.
go back to reference McHorney , C. A., & Tarlov, A. R. (1995). Individual-patient monitoring in clinical practice: are available health status surveys adequate? Quality of Life Research, 4(4), 293–307.PubMedCrossRef McHorney , C. A., & Tarlov, A. R. (1995). Individual-patient monitoring in clinical practice: are available health status surveys adequate? Quality of Life Research, 4(4), 293–307.PubMedCrossRef
18.
go back to reference Rubenstein, L. V., McCoy, J. M., & Cope, D. W., et al. (1995). Improving patient quality of life with feedback to physicians about functional status. Journal of General Internal Medicine, 10(11), 607–614.PubMedCrossRef Rubenstein, L. V., McCoy, J. M., & Cope, D. W., et al. (1995). Improving patient quality of life with feedback to physicians about functional status. Journal of General Internal Medicine, 10(11), 607–614.PubMedCrossRef
19.
go back to reference Nelson, E. C., Landgraf, J. M., Hays, R. D., Wasson, J. H., & Kirk, J. W. (1990). The functional status of patients. How can it be measured in physicians’ offices? Medical Care, 28(12), 1111–1126.PubMedCrossRef Nelson, E. C., Landgraf, J. M., Hays, R. D., Wasson, J. H., & Kirk, J. W. (1990). The functional status of patients. How can it be measured in physicians’ offices? Medical Care, 28(12), 1111–1126.PubMedCrossRef
20.
go back to reference Bezjak, A., Ng, P., Taylor, K., MacDonald, K., & Depetrillo, A. D. (1997). A preliminary survey of oncologists’ perceptions of quality of life information. Psychooncology, 6(2), 107–113.PubMedCrossRef Bezjak, A., Ng, P., Taylor, K., MacDonald, K., & Depetrillo, A. D. (1997). A preliminary survey of oncologists’ perceptions of quality of life information. Psychooncology, 6(2), 107–113.PubMedCrossRef
21.
go back to reference Taylor, K. M., Macdonald, K. G., Bezjak, A., Ng P., & DePetrillo, A. D. (1996). Physicians’ perspective on quality of life: an exploratory study of oncologists. Quality of Life Research, 5(1), 5–14.PubMedCrossRef Taylor, K. M., Macdonald, K. G., Bezjak, A., Ng P., & DePetrillo, A. D. (1996). Physicians’ perspective on quality of life: an exploratory study of oncologists. Quality of Life Research, 5(1), 5–14.PubMedCrossRef
22.
go back to reference Bates , D. W., & Gawande, A. A. (2003). Improving safety with information technology. The New England Journal of Medicine 348(25), 19 June 2003, pp. 2526–2534. Bates , D. W., & Gawande, A. A. (2003). Improving safety with information technology. The New England Journal of Medicine 348(25), 19 June 2003, pp. 2526–2534.
23.
go back to reference Koppel, R., Metlay, J. P., & Cohen, A., et al. (2005). Role of computerized physician order entry systems in facilitating medication errors. The Journal of American Medical Association, 293(10), 1197–1203.CrossRef Koppel, R., Metlay, J. P., & Cohen, A., et al. (2005). Role of computerized physician order entry systems in facilitating medication errors. The Journal of American Medical Association, 293(10), 1197–1203.CrossRef
24.
go back to reference Yancik, R., Edwards, B. K., & Yates, J. W. (1989). Assessing the quality of life of cancer patients: Practical issues in study implementation. Journal of Psychosocial Oncology, 7(4), 59–74.CrossRef Yancik, R., Edwards, B. K., & Yates, J. W. (1989). Assessing the quality of life of cancer patients: Practical issues in study implementation. Journal of Psychosocial Oncology, 7(4), 59–74.CrossRef
25.
go back to reference Hambleton, R. K., Swaminathan, H., Rogers, H. J. (2000). Fundamentals of item response theory; 1991. Hambleton, R. K., Swaminathan, H., Rogers, H. J. (2000). Fundamentals of item response theory; 1991.
26.
go back to reference Humana buys into Web-based surveys to ID high-risk members. Health Demand Dis Manag, 6(6), 89–92. Humana buys into Web-based surveys to ID high-risk members. Health Demand Dis Manag, 6(6), 89–92.
27.
go back to reference Wyatt, J. C. (2000). When to use web-based surveys. Journal of American Medical Informatics Association, 7(4), 426–429. Wyatt, J. C. (2000). When to use web-based surveys. Journal of American Medical Informatics Association, 7(4), 426–429.
28.
go back to reference Naylor, M. R., Helzer, J. E., Naud, S., & Keefe, F. J. (2002). Automated telephone as an adjunct for the treatment of chronic pain: a pilot study. Journal of Pain, 3(6), 429–438.PubMedCrossRef Naylor, M. R., Helzer, J. E., Naud, S., & Keefe, F. J. (2002). Automated telephone as an adjunct for the treatment of chronic pain: a pilot study. Journal of Pain, 3(6), 429–438.PubMedCrossRef
29.
go back to reference Piette, J. D. (2000). Interactive voice response systems in the diagnosis and management of chronic disease. American Journal of Management Care, 6(7), 817–827. Piette, J. D. (2000). Interactive voice response systems in the diagnosis and management of chronic disease. American Journal of Management Care, 6(7), 817–827.
30.
go back to reference Ware, J. E. Jr., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30(6), 473–483.PubMedCrossRef Ware, J. E. Jr., & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30(6), 473–483.PubMedCrossRef
31.
go back to reference Cella, D. F., Tulsky, D. S., & Gray, G., et al. (1993). The functional assessment of cancer therapy scale: development and validation of the general measure. Journal of Clinical Oncology, 11(3), 570–579.PubMed Cella, D. F., Tulsky, D. S., & Gray, G., et al. (1993). The functional assessment of cancer therapy scale: development and validation of the general measure. Journal of Clinical Oncology, 11(3), 570–579.PubMed
32.
go back to reference Aaronson, N. K., Ahmedzai, S., & Bergman, B., et al. (1993). The European organization for research and treatment of cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. Journal of National Cancer Institute, 85(5), 365–376.CrossRef Aaronson, N. K., Ahmedzai, S., & Bergman, B., et al. (1993). The European organization for research and treatment of cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. Journal of National Cancer Institute, 85(5), 365–376.CrossRef
33.
go back to reference Eremenco, S. L., Cella, D., & Arnold, B. J. (2005). A comprehensive method for the translation, cross-cultural validation of health status questionnaires. Evaluation &the Health Professions, 28(2), 212–232.CrossRef Eremenco, S. L., Cella, D., & Arnold, B. J. (2005). A comprehensive method for the translation, cross-cultural validation of health status questionnaires. Evaluation &the Health Professions, 28(2), 212–232.CrossRef
34.
go back to reference Bowden, A., & Fox-Rushby, J. A. (2003). A systematic and critical review of the process of translation and adaptation of generic health-related quality of life measures in Africa, Asia, Eastern Europe, the Middle East, South America. Society of Science Medicine, 57(7), 1289–1306.CrossRef Bowden, A., & Fox-Rushby, J. A. (2003). A systematic and critical review of the process of translation and adaptation of generic health-related quality of life measures in Africa, Asia, Eastern Europe, the Middle East, South America. Society of Science Medicine, 57(7), 1289–1306.CrossRef
35.
go back to reference Maneesriwongul, W., & Dixon, J. K. (2004). Instrument translation process: a methods review. Journal of Advanced Nursing, 48(2), 175–186.PubMedCrossRef Maneesriwongul, W., & Dixon, J. K. (2004). Instrument translation process: a methods review. Journal of Advanced Nursing, 48(2), 175–186.PubMedCrossRef
36.
go back to reference HIPAA privacy rule and public health. Guidance from CDC and the U.S. Department of Health and Human Services. MMWR Morb Mortal Weekly Report 52 Suppl, 1–17, 19–20, 2 May 2003. HIPAA privacy rule and public health. Guidance from CDC and the U.S. Department of Health and Human Services. MMWR Morb Mortal Weekly Report 52 Suppl, 1–17, 19–20, 2 May 2003.
37.
go back to reference Lax, J. R. (2002). The modified HIPAA Privacy Rule. Health Insurance Portability and Accountability Act. Optometry, 73(10), 635–645.PubMed Lax, J. R. (2002). The modified HIPAA Privacy Rule. Health Insurance Portability and Accountability Act. Optometry, 73(10), 635–645.PubMed
38.
go back to reference Nosowsky, R., & Giordano, T. J. (2006). The Health Insurance Portability and Accountability Act of 1996 (HIPAA) privacy rule: implications for clinical research. Annual Review of Medicine, 57, 575–590.PubMedCrossRef Nosowsky, R., & Giordano, T. J. (2006). The Health Insurance Portability and Accountability Act of 1996 (HIPAA) privacy rule: implications for clinical research. Annual Review of Medicine, 57, 575–590.PubMedCrossRef
39.
go back to reference Wainer H, Dorans NJ, Green BF, et al. (1990).Computerized adaptive testing: A primer. Wainer H, Dorans NJ, Green BF, et al. (1990).Computerized adaptive testing: A primer.
40.
go back to reference Ware, J. E. Jr., Bjorner, J. B., & Kosinski, M. (2000). Practical implications of item response theory and computerized adaptive testing: a brief summary of ongoing studies of widely used headache impact scales. Medical Care, 38(9 Suppl), II73–II82.PubMed Ware, J. E. Jr., Bjorner, J. B., & Kosinski, M. (2000). Practical implications of item response theory and computerized adaptive testing: a brief summary of ongoing studies of widely used headache impact scales. Medical Care, 38(9 Suppl), II73–II82.PubMed
41.
go back to reference Ware, J. E. Jr., Kosinski, M., & Bjorner, J. B., et al. (2003). Applications of computerized adaptive testing (CAT) to the assessment of headache impact. Quality of Life Research, 12(8), 935–952.PubMedCrossRef Ware, J. E. Jr., Kosinski, M., & Bjorner, J. B., et al. (2003). Applications of computerized adaptive testing (CAT) to the assessment of headache impact. Quality of Life Research, 12(8), 935–952.PubMedCrossRef
42.
43.
go back to reference Cella , D. (2006). The FDA, the person with cancer: give PROs a chance. Oncology (Williston Park), 20(4), 436. Cella , D. (2006). The FDA, the person with cancer: give PROs a chance. Oncology (Williston Park), 20(4), 436.
44.
go back to reference Fries, J. F., Bruce, B., & Cella, D. (2005). The promise of PROMIS: using item response theory to improve assessment of patient-reported outcomes. Clinical Experimental Rheumatology, 23(5 Suppl 39), S53–57. Fries, J. F., Bruce, B., & Cella, D. (2005). The promise of PROMIS: using item response theory to improve assessment of patient-reported outcomes. Clinical Experimental Rheumatology, 23(5 Suppl 39), S53–57.
45.
go back to reference Reeve, B. B. (2006). Special issues for building computerized-adaptive tests for measuring patient-reported outcomes: The National Institute of Health’s Investment in New Technology. Medical Care, 44(11 Suppl 3), S198–S204.PubMedCrossRef Reeve, B. B. (2006). Special issues for building computerized-adaptive tests for measuring patient-reported outcomes: The National Institute of Health’s Investment in New Technology. Medical Care, 44(11 Suppl 3), S198–S204.PubMedCrossRef
Metagegevens
Titel
Patient-reported outcomes measurement and management with innovative methodologies and technologies
Auteur
Chih-Hung Chang
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/s11136-007-9196-2

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