Skip to main content
Top
Gepubliceerd in: Quality of Life Research 5/2014

01-06-2014

Using existing data to identify candidate items for a health state classification system in multiple sclerosis

Auteurs: Ayse Kuspinar, Lois Finch, Simon Pickard, Nancy E. Mayo

Gepubliceerd in: Quality of Life Research | Uitgave 5/2014

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

Purpose

In multiple sclerosis (MS), the use of preference-based measures is limited to generic measures such as Health Utilities Index Mark 2 and 3, the EQ-5D and the SF-6D. However, the challenge of using such generic preference-based measures in people with MS is that they may not capture all domains of health relevant to the disease. Therefore, the main aim of this paper is to describe the development of a health state classification system for MS patients. The specific objectives are: (1) to identify items best reflecting the domains of quality of life important to people with MS and (2) to provide evidence for the discriminative capacity of the response options by cross-walking onto a visual analog scale of health rating.

Methods

The data come from an epidemiologically sampled population of people with MS diagnosed post-1994. The dataset consisted of 206 items relating to impairments, activity limitations, participation restrictions, health perception and quality of life. Important domains were identified from the responses to the Patient Generated Index, an individualized measure of quality of life. The extent to which the items formed a uni-dimensional, linear construct was estimated using Rasch analysis, and the best item was selected using the threshold map.

Results

The sample was young (mean age 43) and predominantly female (n = 140/189; 74 %). The P-PBMSI classification system consisted of five items, with three response levels per item, producing a total of 243 possible health states. Regression coefficient values consistently decreased between response levels and the linear test for trend were statistically significant for all items. The linear test for trend indicated that for each item the response options provided the same discriminative ability within the magnitude of their capacity. A scoring algorithm was estimated using a simple additive formula. The classification system demonstrated convergent validity against other measures of similar constructs and known-groups validity between different clinical subgroups.

Conclusion

This study produced a health state classifier system based on items impacted upon by MS, and demonstrated the potential to discriminate the health impact of the disease.
Literatuur
1.
go back to reference Miller, D. M., Moore, S. M., Fox, R. J., Atreja, A., Fu, A. Z., Lee, J. C., et al. (2011). Web-based self-management for patients with multiple sclerosis: A practical, randomized trial. Telemedicine Journal & E-Health, 17, 5–13.CrossRef Miller, D. M., Moore, S. M., Fox, R. J., Atreja, A., Fu, A. Z., Lee, J. C., et al. (2011). Web-based self-management for patients with multiple sclerosis: A practical, randomized trial. Telemedicine Journal & E-Health, 17, 5–13.CrossRef
2.
go back to reference Barlow, J., Turner, A., Edwards, R., & Gilchrist, M. (2009). A randomised controlled trial of lay-led self-management for people with multiple sclerosis. Patient Education and Counseling, 77, 81–89.PubMedCrossRef Barlow, J., Turner, A., Edwards, R., & Gilchrist, M. (2009). A randomised controlled trial of lay-led self-management for people with multiple sclerosis. Patient Education and Counseling, 77, 81–89.PubMedCrossRef
3.
go back to reference Bombardier, C. H., Cunniffe, M., Wadhwani, R., Gibbons, L. E., Blake, K. D., & Kraft, G. H. (2008). The efficacy of telephone counseling for health promotion in people with multiple sclerosis: A randomized controlled trial. Archives of Physical Medicine and Rehabilitation, 89, 1849–1856.PubMedCrossRef Bombardier, C. H., Cunniffe, M., Wadhwani, R., Gibbons, L. E., Blake, K. D., & Kraft, G. H. (2008). The efficacy of telephone counseling for health promotion in people with multiple sclerosis: A randomized controlled trial. Archives of Physical Medicine and Rehabilitation, 89, 1849–1856.PubMedCrossRef
4.
go back to reference McAuley, E., Motl, R. W., Morris, K. S., Hu, L., Doerksen, S. E., Elavsky, S., et al. (2007). Enhancing physical activity adherence and well-being in multiple sclerosis: A randomised controlled trial. Multiple Sclerosis, 13, 652–659.PubMedCrossRef McAuley, E., Motl, R. W., Morris, K. S., Hu, L., Doerksen, S. E., Elavsky, S., et al. (2007). Enhancing physical activity adherence and well-being in multiple sclerosis: A randomised controlled trial. Multiple Sclerosis, 13, 652–659.PubMedCrossRef
5.
go back to reference Grossman, P., Kappos, L., Gensicke, H., D’Souza, M., Mohr, D. C., Penner, I. K., et al. (2010). MS quality of life, depression, and fatigue improve after mindfulness training: A randomized trial. Neurology, 75, 1141–1149.PubMedCentralPubMedCrossRef Grossman, P., Kappos, L., Gensicke, H., D’Souza, M., Mohr, D. C., Penner, I. K., et al. (2010). MS quality of life, depression, and fatigue improve after mindfulness training: A randomized trial. Neurology, 75, 1141–1149.PubMedCentralPubMedCrossRef
6.
go back to reference Forman, A. C., & Lincoln, N. B. (2010). Evaluation of an adjustment group for people with multiple sclerosis: A pilot randomized controlled trial. Clinical Rehabilitation, 24, 211–221.PubMedCrossRef Forman, A. C., & Lincoln, N. B. (2010). Evaluation of an adjustment group for people with multiple sclerosis: A pilot randomized controlled trial. Clinical Rehabilitation, 24, 211–221.PubMedCrossRef
7.
go back to reference Cosio, D., Jin, L., Siddique, J., & Mohr, D. C. (2011). The effect of telephone-administered cognitive-behavioral therapy on quality of life among patients with multiple sclerosis. Annals of Behavioral Medicine, 41, 227–234.PubMedCentralPubMedCrossRef Cosio, D., Jin, L., Siddique, J., & Mohr, D. C. (2011). The effect of telephone-administered cognitive-behavioral therapy on quality of life among patients with multiple sclerosis. Annals of Behavioral Medicine, 41, 227–234.PubMedCentralPubMedCrossRef
8.
go back to reference Kavia, R. B., De, R. D., Constantinescu, C. S., Stott, C. G., & Fowler, C. J. (2010). Randomized controlled trial of Sativex to treat detrusor overactivity in multiple sclerosis. Multiple Sclerosis, 16, 1349–1359.PubMedCrossRef Kavia, R. B., De, R. D., Constantinescu, C. S., Stott, C. G., & Fowler, C. J. (2010). Randomized controlled trial of Sativex to treat detrusor overactivity in multiple sclerosis. Multiple Sclerosis, 16, 1349–1359.PubMedCrossRef
9.
go back to reference Moller, F., Poettgen, J., Broemel, F., Neuhaus, A., Daumer, M., & Heesen, C. (2011). HAGIL (Hamburg Vigil Study): A randomized placebo-controlled double-blind study with modafinil for treatment of fatigue in patients with multiple sclerosis. Multiple Sclerosis, 17, 1002–1009.PubMedCrossRef Moller, F., Poettgen, J., Broemel, F., Neuhaus, A., Daumer, M., & Heesen, C. (2011). HAGIL (Hamburg Vigil Study): A randomized placebo-controlled double-blind study with modafinil for treatment of fatigue in patients with multiple sclerosis. Multiple Sclerosis, 17, 1002–1009.PubMedCrossRef
10.
go back to reference Freeman, J. A., Thompson, A. J., Fitzpatrick, R., Hutchinson, M., Miltenburger, C., Beckmann, K., et al. (2001). European Study Group on Interferon-beta: Interferon-beta1b in the treatment of secondary progressive MS: Impact on quality of life. Neurology, 57, 1870–1875.PubMedCrossRef Freeman, J. A., Thompson, A. J., Fitzpatrick, R., Hutchinson, M., Miltenburger, C., Beckmann, K., et al. (2001). European Study Group on Interferon-beta: Interferon-beta1b in the treatment of secondary progressive MS: Impact on quality of life. Neurology, 57, 1870–1875.PubMedCrossRef
11.
go back to reference Rudick, R. A., Miller, D., Hass, S., Hutchinson, M., Calabresi, P. A., Confavreux, C., et al. (2007). AFFIRM and SENTINEL investigators: Health-related quality of life in multiple sclerosis: Effects of natalizumab. Annals of Neurology, 62, 335–346.PubMedCrossRef Rudick, R. A., Miller, D., Hass, S., Hutchinson, M., Calabresi, P. A., Confavreux, C., et al. (2007). AFFIRM and SENTINEL investigators: Health-related quality of life in multiple sclerosis: Effects of natalizumab. Annals of Neurology, 62, 335–346.PubMedCrossRef
12.
go back to reference Fox, R. J., Miller, D. H., Phillips, J. T., Hutchinson, M., Havrdova, E., Kita, M., et al. (2012). Placebo-controlled phase 3 study of oral BG-12 or glatiramer in multiple sclerosis. New England Journal of Medicine, 367, 1087–1097.PubMedCrossRef Fox, R. J., Miller, D. H., Phillips, J. T., Hutchinson, M., Havrdova, E., Kita, M., et al. (2012). Placebo-controlled phase 3 study of oral BG-12 or glatiramer in multiple sclerosis. New England Journal of Medicine, 367, 1087–1097.PubMedCrossRef
13.
go back to reference Freedman, M. S., Bar-Or, A., Atkins, H. L., Karussis, D., Frassoni, F., Lazarus, H., et al. (2010). The therapeutic potential of mesenchymal stem cell transplantation as a treatment for multiple sclerosis: Consensus report of the International MSCT Study Group. Multiple Sclerosis, 16, 503–510.PubMedCrossRef Freedman, M. S., Bar-Or, A., Atkins, H. L., Karussis, D., Frassoni, F., Lazarus, H., et al. (2010). The therapeutic potential of mesenchymal stem cell transplantation as a treatment for multiple sclerosis: Consensus report of the International MSCT Study Group. Multiple Sclerosis, 16, 503–510.PubMedCrossRef
14.
go back to reference Zamboni, P., Menegatti, E., Galeotti, R., Malagoni, A. M., Tacconi, G., Dall’Ara, S., et al. (2009). The value of cerebral Doppler venous haemodynamics in the assessment of multiple sclerosis. Journal of the Neurological Sciences, 282, 21–27.PubMedCrossRef Zamboni, P., Menegatti, E., Galeotti, R., Malagoni, A. M., Tacconi, G., Dall’Ara, S., et al. (2009). The value of cerebral Doppler venous haemodynamics in the assessment of multiple sclerosis. Journal of the Neurological Sciences, 282, 21–27.PubMedCrossRef
15.
go back to reference Al-Omari, M. H., & Rousan, L. A. (2010). Internal jugular vein morphology and hemodynamics in patients with multiple sclerosis. International Angiology, 29, 115–120.PubMed Al-Omari, M. H., & Rousan, L. A. (2010). Internal jugular vein morphology and hemodynamics in patients with multiple sclerosis. International Angiology, 29, 115–120.PubMed
16.
go back to reference Baracchini, C., Perini, P., Calabrese, M., Causin, F., Rinaldi, F., & Gallo, P. (2011). No evidence of chronic cerebrospinal venous insufficiency at multiple sclerosis onset. Annals of Neurology, 69, 90–99.PubMedCrossRef Baracchini, C., Perini, P., Calabrese, M., Causin, F., Rinaldi, F., & Gallo, P. (2011). No evidence of chronic cerebrospinal venous insufficiency at multiple sclerosis onset. Annals of Neurology, 69, 90–99.PubMedCrossRef
17.
go back to reference Centonze, D., Floris, R., Stefanini, M., Rossi, S., Fabiano, S., Castelli, M., et al. (2011). Proposed chronic cerebrospinal venous insufficiency criteria do not predict multiple sclerosis risk or severity. Annals of Neurology, 70, 51–58.PubMedCrossRef Centonze, D., Floris, R., Stefanini, M., Rossi, S., Fabiano, S., Castelli, M., et al. (2011). Proposed chronic cerebrospinal venous insufficiency criteria do not predict multiple sclerosis risk or severity. Annals of Neurology, 70, 51–58.PubMedCrossRef
18.
go back to reference Zivadinov, R., Marr, K., Cutter, G., Ramanathan, M., Benedict, R. H., Kennedy, C., et al. (2011). Prevalence, sensitivity, and specificity of chronic cerebrospinal venous insufficiency in MS. Neurology, 77, 138–144.PubMedCrossRef Zivadinov, R., Marr, K., Cutter, G., Ramanathan, M., Benedict, R. H., Kennedy, C., et al. (2011). Prevalence, sensitivity, and specificity of chronic cerebrospinal venous insufficiency in MS. Neurology, 77, 138–144.PubMedCrossRef
19.
go back to reference Feeny, D., Furlong, W., Torrance, G. W., Goldsmith, C. H., Zhu, Z., DePauw, S., et al. (2002). Multiattribute and single-attribute utility functions for the health utilities index mark 3 system. Medical Care, 40, 113–128.PubMedCrossRef Feeny, D., Furlong, W., Torrance, G. W., Goldsmith, C. H., Zhu, Z., DePauw, S., et al. (2002). Multiattribute and single-attribute utility functions for the health utilities index mark 3 system. Medical Care, 40, 113–128.PubMedCrossRef
20.
go back to reference Torrance, G. W. (1986). Measurement of health state utilities for economic appraisal. J Health Economics, 5, 1–30.CrossRef Torrance, G. W. (1986). Measurement of health state utilities for economic appraisal. J Health Economics, 5, 1–30.CrossRef
21.
go back to reference Torrance, G. W., Boyle, M. H., & Horwood, S. P. (1982). Application of multi-attribute utility theory to measure social preferences for health states. Operations Research, 30, 1043–1069.PubMedCrossRef Torrance, G. W., Boyle, M. H., & Horwood, S. P. (1982). Application of multi-attribute utility theory to measure social preferences for health states. Operations Research, 30, 1043–1069.PubMedCrossRef
22.
go back to reference Brazier, J., Ratcliffe, J., Salomon, J. A., & Tsuchiya, A. (2007). Measuring and valuing health benefits for economic evaluation. New York: Oxford University Press Inc. Brazier, J., Ratcliffe, J., Salomon, J. A., & Tsuchiya, A. (2007). Measuring and valuing health benefits for economic evaluation. New York: Oxford University Press Inc.
23.
go back to reference Mavranezouli, I., Brazier, J. E., Young, T. A., & Barkham, M. (2011). Using Rasch analysis to form plausible health states amenable to valuation: The development of CORE-6D from a measure of common mental health problems (CORE-OM). Quality of Life Research, 20, 321–333.PubMedCrossRef Mavranezouli, I., Brazier, J. E., Young, T. A., & Barkham, M. (2011). Using Rasch analysis to form plausible health states amenable to valuation: The development of CORE-6D from a measure of common mental health problems (CORE-OM). Quality of Life Research, 20, 321–333.PubMedCrossRef
24.
go back to reference Kind, P. (2005). Values and valuation in the measurement of HRQoL. In P. Fayers & D. Hays (Eds.), Assessing quality of life in clinical trials (pp. 391–404). New York: Oxford University Press Inc. Kind, P. (2005). Values and valuation in the measurement of HRQoL. In P. Fayers & D. Hays (Eds.), Assessing quality of life in clinical trials (pp. 391–404). New York: Oxford University Press Inc.
25.
go back to reference Feeny, D., Torrance, G. W., & Furlong, W. (1996). Health utilities index. In B. Spilker (Ed.), Quality of life and pharmaeconomics in clinicals trials (pp. 239–252). Philadelphia: Lippincott-Raven Publishers. Feeny, D., Torrance, G. W., & Furlong, W. (1996). Health utilities index. In B. Spilker (Ed.), Quality of life and pharmaeconomics in clinicals trials (pp. 239–252). Philadelphia: Lippincott-Raven Publishers.
26.
go back to reference Feeny, D. (2005). Preference-based measures: Utility and quality-adjusted life years. In P. Fayers & D. Hays (Eds.), Assessing quality of life in clinical trials (pp. 405–429). New York: Oxford University Press Inc. Feeny, D. (2005). Preference-based measures: Utility and quality-adjusted life years. In P. Fayers & D. Hays (Eds.), Assessing quality of life in clinical trials (pp. 405–429). New York: Oxford University Press Inc.
27.
go back to reference Guyatt, G. H., Feeny, D. H., & Patrick, D. L. (1993). Measuring health-related quality of life. Annals of Internal Medicine, 118, 622–629.PubMedCrossRef Guyatt, G. H., Feeny, D. H., & Patrick, D. L. (1993). Measuring health-related quality of life. Annals of Internal Medicine, 118, 622–629.PubMedCrossRef
28.
go back to reference Revicki, D. A., & Kaplan, R. M. (1993). Relationship between psychometric and utility-based approaches to the measurement of health-related quality of life. Quality of Life Research, 2, 477–487.PubMedCrossRef Revicki, D. A., & Kaplan, R. M. (1993). Relationship between psychometric and utility-based approaches to the measurement of health-related quality of life. Quality of Life Research, 2, 477–487.PubMedCrossRef
29.
go back to reference Berzon, R., Mauskopf, J. A., & Simeon, G. P. (1996). Choosing a health profile (descriptive) and/or a patient-preference (utility) measure for a clinical trial. In B. Spilker (Ed.), Quality of life and pharmaeconomics in clinical trials (pp. 375–379). Philadelphia: Lippincott-Raven Publishers. Berzon, R., Mauskopf, J. A., & Simeon, G. P. (1996). Choosing a health profile (descriptive) and/or a patient-preference (utility) measure for a clinical trial. In B. Spilker (Ed.), Quality of life and pharmaeconomics in clinical trials (pp. 375–379). Philadelphia: Lippincott-Raven Publishers.
30.
go back to reference Feeny, D. H., & Torrance, G. W. (1989). Incorporating utility-based quality-of-life assessment measures in clinical trials. Two examples. Medical Care, 27, S190–S204.PubMedCrossRef Feeny, D. H., & Torrance, G. W. (1989). Incorporating utility-based quality-of-life assessment measures in clinical trials. Two examples. Medical Care, 27, S190–S204.PubMedCrossRef
31.
go back to reference Torrance, G. W. (1987). Utility approach to measuring health-related quality of life. Journal of Chronic Diseases, 40, 593–603.PubMedCrossRef Torrance, G. W. (1987). Utility approach to measuring health-related quality of life. Journal of Chronic Diseases, 40, 593–603.PubMedCrossRef
32.
go back to reference Kind, P., Lafata, J. E., Matuszewski, K., & Raisch, D. (2009). The use of QALYs in clinical and patient decision-making: Issues and prospects. Value Health, 12(Suppl 1), S27–S30.PubMedCrossRef Kind, P., Lafata, J. E., Matuszewski, K., & Raisch, D. (2009). The use of QALYs in clinical and patient decision-making: Issues and prospects. Value Health, 12(Suppl 1), S27–S30.PubMedCrossRef
33.
go back to reference Hawthorne, G., & Richardson, J. (2001). Measuring the value of program outcomes: A review of multiattribute utility measures. Expert Review of Pharmacoeconomics & Outcomes Research, 1, 215–228.CrossRef Hawthorne, G., & Richardson, J. (2001). Measuring the value of program outcomes: A review of multiattribute utility measures. Expert Review of Pharmacoeconomics & Outcomes Research, 1, 215–228.CrossRef
34.
go back to reference Guyatt, G. H., Veldhuyzen Van Zanten, S. J., Feeny, D. H., & Patrick, D. L. (1989). Measuring quality of life in clinical trials: A taxonomy and review. Canadian Medical Association Journal, 140, 1441–1448.PubMedCentralPubMed Guyatt, G. H., Veldhuyzen Van Zanten, S. J., Feeny, D. H., & Patrick, D. L. (1989). Measuring quality of life in clinical trials: A taxonomy and review. Canadian Medical Association Journal, 140, 1441–1448.PubMedCentralPubMed
35.
go back to reference Kuspinar, A., & Mayo, N. E. (2013). Do generic utility measures capture what is important to the quality of life of people with multiple sclerosis? Health and Quality of Life Outcomes, 11, 71.PubMedCentralPubMedCrossRef Kuspinar, A., & Mayo, N. E. (2013). Do generic utility measures capture what is important to the quality of life of people with multiple sclerosis? Health and Quality of Life Outcomes, 11, 71.PubMedCentralPubMedCrossRef
36.
go back to reference Hemmett, L., Holmes, J., Barnes, M., & Russell, N. (2004). What drives quality of life in multiple sclerosis? QJM, 97, 671–676.PubMedCrossRef Hemmett, L., Holmes, J., Barnes, M., & Russell, N. (2004). What drives quality of life in multiple sclerosis? QJM, 97, 671–676.PubMedCrossRef
37.
go back to reference Nicholl, C. R., Lincoln, N. B., Francis, V. M., & Stephan, T. F. (2001). Assessing quality of life in people with multiple sclerosis. Disability and Rehabilitation, 23, 597–603.PubMedCrossRef Nicholl, C. R., Lincoln, N. B., Francis, V. M., & Stephan, T. F. (2001). Assessing quality of life in people with multiple sclerosis. Disability and Rehabilitation, 23, 597–603.PubMedCrossRef
38.
go back to reference Fisk, J. D., Brown, M. G., Sketris, I. S., Metz, L. M., Murray, T. J., & Stadnyk, K. J. (2005). A comparison of health utility measures for the evaluation of multiple sclerosis treatments. Journal of Neurology, Neurosurgery and Psychiatry, 76, 58–63.PubMedCentralPubMedCrossRef Fisk, J. D., Brown, M. G., Sketris, I. S., Metz, L. M., Murray, T. J., & Stadnyk, K. J. (2005). A comparison of health utility measures for the evaluation of multiple sclerosis treatments. Journal of Neurology, Neurosurgery and Psychiatry, 76, 58–63.PubMedCentralPubMedCrossRef
39.
go back to reference Williams, A. (2005). The EuroQol instrument. In P. Kind, R. Brooks, & R. Rabin (Eds.), EQ-5D concepts and methods: A developmental history (pp. 1–17). Dordrecht: Springers.CrossRef Williams, A. (2005). The EuroQol instrument. In P. Kind, R. Brooks, & R. Rabin (Eds.), EQ-5D concepts and methods: A developmental history (pp. 1–17). Dordrecht: Springers.CrossRef
40.
go back to reference Poissant, L., Mayo, N. E., Wood-Dauphinee, S., & Clarke, A. E. (2003). The development and preliminary validation of a Preference-Based Stroke Index (PBSI). Health and Quality of Life Outcomes, 1, 43.PubMedCentralPubMedCrossRef Poissant, L., Mayo, N. E., Wood-Dauphinee, S., & Clarke, A. E. (2003). The development and preliminary validation of a Preference-Based Stroke Index (PBSI). Health and Quality of Life Outcomes, 1, 43.PubMedCentralPubMedCrossRef
41.
go back to reference Pickard, A. S., Shaw, J. W., Lin, H. W., Trask, P. C., Aaronson, N., Lee, T. A., et al. (2009). A patient-based utility measure of health for clinical trials of cancer therapy based on the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire. Value Health, 12, 977–988.PubMedCrossRef Pickard, A. S., Shaw, J. W., Lin, H. W., Trask, P. C., Aaronson, N., Lee, T. A., et al. (2009). A patient-based utility measure of health for clinical trials of cancer therapy based on the European Organization for the Research and Treatment of Cancer Quality of Life Questionnaire. Value Health, 12, 977–988.PubMedCrossRef
42.
go back to reference Rowen, D., Brazier, J., Young, T., Gaugris, S., Craig, B. M., King, M. T., et al. (2011). Deriving a preference-based measure for cancer using the EORTC QLQ-C30. Value Health, 14, 721–731.PubMedCrossRef Rowen, D., Brazier, J., Young, T., Gaugris, S., Craig, B. M., King, M. T., et al. (2011). Deriving a preference-based measure for cancer using the EORTC QLQ-C30. Value Health, 14, 721–731.PubMedCrossRef
43.
go back to reference Melsop, K. A., Boothroyd, D. B., & Hlatky, M. A. (2003). Quality of life and time trade-off utility measures in patients with coronary artery disease. American Heart Journal, 145, 36–41.PubMedCrossRef Melsop, K. A., Boothroyd, D. B., & Hlatky, M. A. (2003). Quality of life and time trade-off utility measures in patients with coronary artery disease. American Heart Journal, 145, 36–41.PubMedCrossRef
44.
go back to reference McKenna, S. P., Ratcliffe, J., Meads, D. M., & Brazier, J. E. (2008). Development and validation of a preference based measure derived from the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) for use in cost utility analyses. Health and Quality of Life Outcomes, 6, 65.PubMedCentralPubMedCrossRef McKenna, S. P., Ratcliffe, J., Meads, D. M., & Brazier, J. E. (2008). Development and validation of a preference based measure derived from the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) for use in cost utility analyses. Health and Quality of Life Outcomes, 6, 65.PubMedCentralPubMedCrossRef
45.
go back to reference Revicki, D. A., Leidy, N. K., Brennan-Diemer, F., Sorensen, S., & Togias, A. (1998). Integrating patient preferences into health outcomes assessment: The multiattribute Asthma Symptom Utility Index. Chest, 114, 998–1007.PubMedCrossRef Revicki, D. A., Leidy, N. K., Brennan-Diemer, F., Sorensen, S., & Togias, A. (1998). Integrating patient preferences into health outcomes assessment: The multiattribute Asthma Symptom Utility Index. Chest, 114, 998–1007.PubMedCrossRef
46.
go back to reference Revicki, D. A., Leidy, N. K., Brennan-Diemer, F., Thompson, C., & Togias, A. (1998). Development and preliminary validation of the multiattribute Rhinitis Symptom Utility Index. Quality of Life Research, 7, 693–702.PubMedCrossRef Revicki, D. A., Leidy, N. K., Brennan-Diemer, F., Thompson, C., & Togias, A. (1998). Development and preliminary validation of the multiattribute Rhinitis Symptom Utility Index. Quality of Life Research, 7, 693–702.PubMedCrossRef
47.
go back to reference Brazier, J., Czoski-Murray, C., Roberts, J., Brown, M., Symonds, T., & Kelleher, C. (2008). Estimation of a preference-based index from a condition-specific measure: The King’s Health Questionnaire. Medical Decision Making, 28, 113–126.PubMedCrossRef Brazier, J., Czoski-Murray, C., Roberts, J., Brown, M., Symonds, T., & Kelleher, C. (2008). Estimation of a preference-based index from a condition-specific measure: The King’s Health Questionnaire. Medical Decision Making, 28, 113–126.PubMedCrossRef
48.
go back to reference Torrance, G. W., Keresteci, M. A., Casey, R. W., Rosner, A. J., Ryan, N., & Breton, M. C. (2004). Development and initial validation of a new preference-based disease-specific health-related quality of life instrument for erectile function. Quality of Life Research, 13, 349–359.PubMedCrossRef Torrance, G. W., Keresteci, M. A., Casey, R. W., Rosner, A. J., Ryan, N., & Breton, M. C. (2004). Development and initial validation of a new preference-based disease-specific health-related quality of life instrument for erectile function. Quality of Life Research, 13, 349–359.PubMedCrossRef
49.
go back to reference Guyatt, G. H., Bombardier, C., & Tugwell, P. X. (1986). Measuring disease-specific quality of life in clinical trials. Canadian Medical Association Journal, 134, 889–895.PubMedCentralPubMed Guyatt, G. H., Bombardier, C., & Tugwell, P. X. (1986). Measuring disease-specific quality of life in clinical trials. Canadian Medical Association Journal, 134, 889–895.PubMedCentralPubMed
50.
go back to reference Brazier, J., & Fitzpatrick, R. (2002). Measures of health-related quality of life in an imperfect world: A comment on Dowie. Health Economics, 11, 17–19.PubMedCrossRef Brazier, J., & Fitzpatrick, R. (2002). Measures of health-related quality of life in an imperfect world: A comment on Dowie. Health Economics, 11, 17–19.PubMedCrossRef
51.
go back to reference Patrick, D. L., Burke, L. B., Powers, J. H., Scott, J. A., Rock, E. P., Dawisha, S., et al. (2007). Patient-reported outcomes to support medical product labeling claims: FDA perspective. Value Health, 10(Suppl 2), S125–S137.PubMedCrossRef Patrick, D. L., Burke, L. B., Powers, J. H., Scott, J. A., Rock, E. P., Dawisha, S., et al. (2007). Patient-reported outcomes to support medical product labeling claims: FDA perspective. Value Health, 10(Suppl 2), S125–S137.PubMedCrossRef
52.
go back to reference Lin, F. J., Longworth, L., Pickard, A. S. (2013). Evaluation of content on EQ-5D as compared to disease-specific utility measures. Quality Life Research, 22(4), 853–874. Lin, F. J., Longworth, L., Pickard, A. S. (2013). Evaluation of content on EQ-5D as compared to disease-specific utility measures. Quality Life Research, 22(4), 853–874.
53.
go back to reference Mayo, N. (2008). Setting the agenda for multiple sclerosis rehabilitation research. Multiple Sclerosis, 14, 1154–1156.PubMedCrossRef Mayo, N. (2008). Setting the agenda for multiple sclerosis rehabilitation research. Multiple Sclerosis, 14, 1154–1156.PubMedCrossRef
54.
go back to reference Freeman, J. A., Hobart, J. C., Langdon, D. W., & Thompson, A. J. (2000). Clinical appropriateness: A key factor in outcome measure selection: The 36 item short form health survey in multiple sclerosis. Journal of Neurology, Neurosurgery and Psychiatry, 68, 150–156.PubMedCentralPubMedCrossRef Freeman, J. A., Hobart, J. C., Langdon, D. W., & Thompson, A. J. (2000). Clinical appropriateness: A key factor in outcome measure selection: The 36 item short form health survey in multiple sclerosis. Journal of Neurology, Neurosurgery and Psychiatry, 68, 150–156.PubMedCentralPubMedCrossRef
55.
go back to reference Nortvedt, M. W., Riise, T., Myhr, K. M., & Nyland, H. I. (2000). Performance of the SF-36, SF-12, and RAND-36 summary scales in a multiple sclerosis population. Medical Care, 38, 1022–1028.PubMedCrossRef Nortvedt, M. W., Riise, T., Myhr, K. M., & Nyland, H. I. (2000). Performance of the SF-36, SF-12, and RAND-36 summary scales in a multiple sclerosis population. Medical Care, 38, 1022–1028.PubMedCrossRef
56.
go back to reference Kikuchi, H., Mifune, N., Niino, M., Ohbu, S., Kira, J., Kohriyama, T., et al. (2011). Impact and characteristics of quality of life in Japanese patients with multiple sclerosis. Quality of Life Research, 20, 119–131.PubMedCrossRef Kikuchi, H., Mifune, N., Niino, M., Ohbu, S., Kira, J., Kohriyama, T., et al. (2011). Impact and characteristics of quality of life in Japanese patients with multiple sclerosis. Quality of Life Research, 20, 119–131.PubMedCrossRef
57.
go back to reference Twiss, J., Doward, L. C., McKenna, S. P., & Eckert, B. (2010). Interpreting scores on multiple sclerosis-specific patient reported outcome measures (the PRIMUS and U-FIS). Health and Quality of Life Outcomes, 8, 117.PubMedCentralPubMedCrossRef Twiss, J., Doward, L. C., McKenna, S. P., & Eckert, B. (2010). Interpreting scores on multiple sclerosis-specific patient reported outcome measures (the PRIMUS and U-FIS). Health and Quality of Life Outcomes, 8, 117.PubMedCentralPubMedCrossRef
58.
go back to reference Ruta, D. A., Garratt, A. M., & Russell, I. T. (1999). Patient centred assessment of quality of life for patients with four common conditions. Quality Health Care, 8, 22–29.CrossRef Ruta, D. A., Garratt, A. M., & Russell, I. T. (1999). Patient centred assessment of quality of life for patients with four common conditions. Quality Health Care, 8, 22–29.CrossRef
59.
go back to reference Sullivan, M. J., Edgley, K., & Dehoux, E. (1990). A survey of multiple sclerosis: I. Perceived cognitive problems and compensatory strategy use. Canadian Journal of Rehabilitation, 4, 99–105. Sullivan, M. J., Edgley, K., & Dehoux, E. (1990). A survey of multiple sclerosis: I. Perceived cognitive problems and compensatory strategy use. Canadian Journal of Rehabilitation, 4, 99–105.
60.
go back to reference Marrie, R. A., Miller, D. M., Chelune, G. J., & Cohen, J. A. (2003). Validity and reliability of the MSQLI in cognitively impaired patients with multiple sclerosis. Multiple Sclerosis, 9, 621–626.PubMedCrossRef Marrie, R. A., Miller, D. M., Chelune, G. J., & Cohen, J. A. (2003). Validity and reliability of the MSQLI in cognitively impaired patients with multiple sclerosis. Multiple Sclerosis, 9, 621–626.PubMedCrossRef
61.
go back to reference Paltamaa, J., West, H., Sarasoja, T., Wikstrom, J., & Malkia, E. (2005). Reliability of physical functioning measures in ambulatory subjects with MS. Physiotherapy Research International, 10, 93–109.PubMedCrossRef Paltamaa, J., West, H., Sarasoja, T., Wikstrom, J., & Malkia, E. (2005). Reliability of physical functioning measures in ambulatory subjects with MS. Physiotherapy Research International, 10, 93–109.PubMedCrossRef
62.
go back to reference Kurtzke, J. F. (1983). Rating neurologic impairment in multiple sclerosis: An expanded disability status scale (EDSS). Neurology, 33, 1444–1452.PubMedCrossRef Kurtzke, J. F. (1983). Rating neurologic impairment in multiple sclerosis: An expanded disability status scale (EDSS). Neurology, 33, 1444–1452.PubMedCrossRef
63.
go back to reference Ruta, D. A., Garratt, A. M., Leng, M., Russell, I. T., & MacDonald, L. M. (1994). A new approach to the measurement of quality of life. The Patient-Generated Index. Medical Care, 32, 1109–1126.PubMedCrossRef Ruta, D. A., Garratt, A. M., Leng, M., Russell, I. T., & MacDonald, L. M. (1994). A new approach to the measurement of quality of life. The Patient-Generated Index. Medical Care, 32, 1109–1126.PubMedCrossRef
64.
go back to reference Schumacker, R. E. (1996). Editor’s note. Structural Equation Modeling: A Multidisciplinary Journal, 3, 1–2.CrossRef Schumacker, R. E. (1996). Editor’s note. Structural Equation Modeling: A Multidisciplinary Journal, 3, 1–2.CrossRef
65.
go back to reference Wright, B. D. (1996). Comparing Rasch measurement and factor analysis. Structural Equation Modeling: A Multidisciplinary Journal, 3, 3–24.CrossRef Wright, B. D. (1996). Comparing Rasch measurement and factor analysis. Structural Equation Modeling: A Multidisciplinary Journal, 3, 3–24.CrossRef
66.
go back to reference Chang, C. H. (1996). Finding two dimensions in MMPI-2 depression. Structural Equation Modeling: A Multidisciplinary Journal, 3, 41–49.CrossRef Chang, C. H. (1996). Finding two dimensions in MMPI-2 depression. Structural Equation Modeling: A Multidisciplinary Journal, 3, 41–49.CrossRef
67.
go back to reference Young, T., Yang, Y., Brazier, J. E., Tsuchiya, A., & Coyne, K. (2009). The first stage of developing preference-based measures: constructing a health-state classification using Rasch analysis. Quality of Life Research, 18, 253–265.PubMedCrossRef Young, T., Yang, Y., Brazier, J. E., Tsuchiya, A., & Coyne, K. (2009). The first stage of developing preference-based measures: constructing a health-state classification using Rasch analysis. Quality of Life Research, 18, 253–265.PubMedCrossRef
68.
go back to reference Andrich, D., Lyne, A., Sheridan, B., & Luo, G. (2004). Rasch unidimensional measurement models (RUMM) 2020. Perth, Western Australia: Rumm Laboratory Pty Ltd. Andrich, D., Lyne, A., Sheridan, B., & Luo, G. (2004). Rasch unidimensional measurement models (RUMM) 2020. Perth, Western Australia: Rumm Laboratory Pty Ltd.
69.
go back to reference Pallant, J. F., & Tennant, A. (2007). An introduction to the Rasch measurement model: An example using the Hospital Anxiety and Depression Scale (HADS). British Journal of Clinical Psychology, 46, 1–18.PubMedCrossRef Pallant, J. F., & Tennant, A. (2007). An introduction to the Rasch measurement model: An example using the Hospital Anxiety and Depression Scale (HADS). British Journal of Clinical Psychology, 46, 1–18.PubMedCrossRef
70.
go back to reference Gibbons, C. J., Mills, R. J., Thornton, E. W., Ealing, J., Mitchell, J. D., Shaw, P. J., et al. (2011). Rasch analysis of the hospital anxiety and depression scale (HADS) for use in motor neurone disease. Health and Quality of Life Outcomes, 9, 82.PubMedCentralPubMedCrossRef Gibbons, C. J., Mills, R. J., Thornton, E. W., Ealing, J., Mitchell, J. D., Shaw, P. J., et al. (2011). Rasch analysis of the hospital anxiety and depression scale (HADS) for use in motor neurone disease. Health and Quality of Life Outcomes, 9, 82.PubMedCentralPubMedCrossRef
71.
go back to reference Bond, T. G., & Fox, C. M. (2007). Applying the Rasch model: Fundamental measurement in the human science. New Jersey: Lawrence Erlbaum Associates Inc. Bond, T. G., & Fox, C. M. (2007). Applying the Rasch model: Fundamental measurement in the human science. New Jersey: Lawrence Erlbaum Associates Inc.
72.
go back to reference Allen, M. J., & Yen, W. M. (2002). Introduction to measurement theory. Long Grove: Waveland Press Inc. Allen, M. J., & Yen, W. M. (2002). Introduction to measurement theory. Long Grove: Waveland Press Inc.
74.
go back to reference Broome, H. (2012) The association between cognition, social functioning, physical impairment, and relationship factors in individuals with multiple sclerosis (pp. 1–195). The University of Hull. Broome, H. (2012) The association between cognition, social functioning, physical impairment, and relationship factors in individuals with multiple sclerosis (pp. 1–195). The University of Hull.
75.
go back to reference Mead, D. E. (2002). Marital distress, co-occurring depression, and marital therapy: A review. Journal of Marital and Family Therapy, 28, 299–314.PubMedCrossRef Mead, D. E. (2002). Marital distress, co-occurring depression, and marital therapy: A review. Journal of Marital and Family Therapy, 28, 299–314.PubMedCrossRef
76.
go back to reference Lee, E. K. O., & Oh, H. (2012). Marital satisfaction among adults with disabilities in South Korea. Journal of Disability Studies Policy, 23, 215–224.CrossRef Lee, E. K. O., & Oh, H. (2012). Marital satisfaction among adults with disabilities in South Korea. Journal of Disability Studies Policy, 23, 215–224.CrossRef
77.
go back to reference Mayo, N. E., Hum, S., & Kuspinar, A. (2013). Methods and measures: What’s new for MS? Multiple Sclerosis, 19, 709–713.PubMedCrossRef Mayo, N. E., Hum, S., & Kuspinar, A. (2013). Methods and measures: What’s new for MS? Multiple Sclerosis, 19, 709–713.PubMedCrossRef
78.
go back to reference Krupp, L. B., & Pollina, D. A. (1996). Mechanisms and management of fatigue in progressive neurological disorders. Current Opinion in Neurology, 9, 456–460.PubMedCrossRef Krupp, L. B., & Pollina, D. A. (1996). Mechanisms and management of fatigue in progressive neurological disorders. Current Opinion in Neurology, 9, 456–460.PubMedCrossRef
79.
go back to reference Fisk, J. D., Pontefract, A., Ritvo, P. G., Archibald, C. J., & Murray, T. J. (1994). The impact of fatigue on patients with multiple sclerosis. Canadian Journal of Neurological Sciences, 21, 9–14.PubMed Fisk, J. D., Pontefract, A., Ritvo, P. G., Archibald, C. J., & Murray, T. J. (1994). The impact of fatigue on patients with multiple sclerosis. Canadian Journal of Neurological Sciences, 21, 9–14.PubMed
80.
go back to reference Freal, J. E., Kraft, G. H., & Coryell, J. K. (1984). Symptomatic fatigue in multiple sclerosis. Archives of Physical Medicine and Rehabilitation, 65, 135–138.PubMed Freal, J. E., Kraft, G. H., & Coryell, J. K. (1984). Symptomatic fatigue in multiple sclerosis. Archives of Physical Medicine and Rehabilitation, 65, 135–138.PubMed
81.
go back to reference Murray, T. J. (1985). Amantadine therapy for fatigue in multiple sclerosis. Canadian Journal of Neurological Sciences, 12, 251–254.PubMed Murray, T. J. (1985). Amantadine therapy for fatigue in multiple sclerosis. Canadian Journal of Neurological Sciences, 12, 251–254.PubMed
82.
go back to reference Deloire, M. S., Bonnet, M. C., Salort, E., Arimone, Y., Boudineau, M., Petry, K. G., et al. (2006). How to detect cognitive dysfunction at early stages of multiple sclerosis? Multiple Sclerosis, 12, 445–452.PubMedCrossRef Deloire, M. S., Bonnet, M. C., Salort, E., Arimone, Y., Boudineau, M., Petry, K. G., et al. (2006). How to detect cognitive dysfunction at early stages of multiple sclerosis? Multiple Sclerosis, 12, 445–452.PubMedCrossRef
83.
go back to reference Peyser, J. M., Edwards, K. R., Poser, C. M., & Filskov, S. B. (1980). Cognitive function in patients with multiple sclerosis. Archives of Neurology, 37, 577–579.PubMedCrossRef Peyser, J. M., Edwards, K. R., Poser, C. M., & Filskov, S. B. (1980). Cognitive function in patients with multiple sclerosis. Archives of Neurology, 37, 577–579.PubMedCrossRef
84.
go back to reference Brazier, J., Akehurst, R., Brennan, A., Dolan, P., Claxton, K., McCabe, C., et al. (2005). Should patients have a greater role in valuing health states? Applied Health Economics and Health Policy, 4, 201–208.PubMedCrossRef Brazier, J., Akehurst, R., Brennan, A., Dolan, P., Claxton, K., McCabe, C., et al. (2005). Should patients have a greater role in valuing health states? Applied Health Economics and Health Policy, 4, 201–208.PubMedCrossRef
85.
go back to reference Ubel, P. A., Loewenstein, G., & Jepson, C. (2003). Whose quality of life? A commentary exploring discrepancies between health state evaluations of patients and the general public. Quality of Life Research, 12, 599–607.PubMedCrossRef Ubel, P. A., Loewenstein, G., & Jepson, C. (2003). Whose quality of life? A commentary exploring discrepancies between health state evaluations of patients and the general public. Quality of Life Research, 12, 599–607.PubMedCrossRef
86.
go back to reference Whitehead, S. J., & Ali, S. (2010). Health outcomes in economic evaluation: The QALY and utilities. British Medical Bulletin, 96, 5–21.PubMedCrossRef Whitehead, S. J., & Ali, S. (2010). Health outcomes in economic evaluation: The QALY and utilities. British Medical Bulletin, 96, 5–21.PubMedCrossRef
87.
go back to reference Stallard, J., & Major, R. E. (1995). The influence of orthosis stiffness on paraplegic ambulation and its implications for functional electrical stimulation (FES) walking systems. Prosthetics and Orthotics International, 19, 108–114.PubMed Stallard, J., & Major, R. E. (1995). The influence of orthosis stiffness on paraplegic ambulation and its implications for functional electrical stimulation (FES) walking systems. Prosthetics and Orthotics International, 19, 108–114.PubMed
88.
go back to reference Brissot, R., Gallien, P., Le Bot, M. P., Beaubras, A., Laisne, D., Beillot, J., et al. (2000). Clinical experience with functional electrical stimulation-assisted gait with Parastep in spinal cord-injured patients. Spine (Phila Pa 1976), 25, 501–508.CrossRef Brissot, R., Gallien, P., Le Bot, M. P., Beaubras, A., Laisne, D., Beillot, J., et al. (2000). Clinical experience with functional electrical stimulation-assisted gait with Parastep in spinal cord-injured patients. Spine (Phila Pa 1976), 25, 501–508.CrossRef
89.
go back to reference Thoumie, P., Perrouin-Verbe, B., Le, C. G., Bedoiseau, M., Busnel, M., Cormerais, A., et al. (1995). Restoration of functional gait in paraplegic patients with the RGO-II hybrid orthosis. A multicentre controlled study. I. Clinical evaluation. Paraplegia, 33, 647–653.PubMedCrossRef Thoumie, P., Perrouin-Verbe, B., Le, C. G., Bedoiseau, M., Busnel, M., Cormerais, A., et al. (1995). Restoration of functional gait in paraplegic patients with the RGO-II hybrid orthosis. A multicentre controlled study. I. Clinical evaluation. Paraplegia, 33, 647–653.PubMedCrossRef
90.
go back to reference Rothman, M., Burke, L., Erickson, P., Leidy, N. K., Patrick, D. L., & Petrie, C. D. (2009). Use of existing patient-reported outcome (PRO) instruments and their modification: The ISPOR good research practices for evaluating and documenting content validity for the use of existing instruments and their modification PRO task force report. Value Health, 12, 1075–1083.PubMedCrossRef Rothman, M., Burke, L., Erickson, P., Leidy, N. K., Patrick, D. L., & Petrie, C. D. (2009). Use of existing patient-reported outcome (PRO) instruments and their modification: The ISPOR good research practices for evaluating and documenting content validity for the use of existing instruments and their modification PRO task force report. Value Health, 12, 1075–1083.PubMedCrossRef
91.
go back to reference Food, U. S. (2009). Drug administration: Guidance for industry: Patient-reported outcome measures: Use in medical product development to support labeling claims. Federal Register, 74, 65132–65133. Food, U. S. (2009). Drug administration: Guidance for industry: Patient-reported outcome measures: Use in medical product development to support labeling claims. Federal Register, 74, 65132–65133.
Metagegevens
Titel
Using existing data to identify candidate items for a health state classification system in multiple sclerosis
Auteurs
Ayse Kuspinar
Lois Finch
Simon Pickard
Nancy E. Mayo
Publicatiedatum
01-06-2014
Uitgeverij
Springer International Publishing
Gepubliceerd in
Quality of Life Research / Uitgave 5/2014
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-013-0604-5

Andere artikelen Uitgave 5/2014

Quality of Life Research 5/2014 Naar de uitgave