Skip to main content
Top
Gepubliceerd in:

01-06-2011

The extent to which common health-related quality of life indices capture constructs beyond symptoms and function

Auteurs: Nancy E. Mayo, Carolina Moriello, Miho Asano, Susara van der Spuy, Lois Finch

Gepubliceerd in: Quality of Life Research | Uitgave 5/2011

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

This study proposes to identify for 5 widely used generic HRQL and QOL measures the extent to which function and global feelings of well-being are represented in their content.

Methods

The 5 indices were the EQ-5D, the HUI, the SF-36, SF-12, and the WHOQOL-Bref. A total of 15 raters with a variety of health and research backgrounds mapped the items. Raters independently identified all codes that could possibly map to the item and indicated the code that best reflected the underlying intent of the item, using the standardized mapping rules and methodology. A Delphi process aided consensus for each of the items. The consensus rounds involved reconsideration of item codes for which 70% of raters did not agree on the “best” code. These consensus rounds were terminated when item codes reached the threshold of 70% agreement or when it became evident from that consensus would not be reached.

Results

Function was a predominant construct for the 5 indices, with the proportion of items capturing function ranging from a low of 27% for the WHOQOL-Bref to a high of 92% for the SF-12. Less than 50% of items within the indices mapped to the granularity of function as described by the ICF.

Conclusions

This paper demonstrates an additional method to validate the content of health-related indices to supplement the qualitative methods of consulting with experts and patients.
Literatuur
2.
go back to reference Farin, E. (2009). Agreement of patient and physician ratings on mobility and self-care in neurological diseases. Quality of Life Research, 18, 999–1010.PubMedCrossRef Farin, E. (2009). Agreement of patient and physician ratings on mobility and self-care in neurological diseases. Quality of Life Research, 18, 999–1010.PubMedCrossRef
3.
go back to reference Sonn, G. A., Sadetsky, N., Presti, J. C., & Litwin, M. S. (2009). Differing perceptions of quality of life in patients with prostate cancer and their doctors. Journal of Urology, 182, 2296–2302.PubMedCrossRef Sonn, G. A., Sadetsky, N., Presti, J. C., & Litwin, M. S. (2009). Differing perceptions of quality of life in patients with prostate cancer and their doctors. Journal of Urology, 182, 2296–2302.PubMedCrossRef
4.
go back to reference Lattig,F., Grob,D., Kleinstueck,F. S., Porchet,F., Jeszenszky,D., Bartanusz,V., O’Riordan,D., and Mannion,A. F. (2009) Ratings of global outcome at the first post-operative assessment after spinal surgery: how often do the surgeon and patient agree? Eur Spine J. 18 Suppl 3, 386-394 Lattig,F., Grob,D., Kleinstueck,F. S., Porchet,F., Jeszenszky,D., Bartanusz,V., O’Riordan,D., and Mannion,A. F. (2009) Ratings of global outcome at the first post-operative assessment after spinal surgery: how often do the surgeon and patient agree? Eur Spine J. 18 Suppl 3, 386-394
5.
go back to reference Korner-Bitensky, N., Wood-Dauphinee, S., Siemiatycki, J., Shapiro, S., & Becker, R. (1994). Health-related information postdischarge: telephone versus face-to-face interviewing. Archives of Physical Medicine and Rehabilitation, 75, 1287–1296.PubMed Korner-Bitensky, N., Wood-Dauphinee, S., Siemiatycki, J., Shapiro, S., & Becker, R. (1994). Health-related information postdischarge: telephone versus face-to-face interviewing. Archives of Physical Medicine and Rehabilitation, 75, 1287–1296.PubMed
6.
go back to reference Pickard, A. S., Johnson, J. A., Feeny, D. H., Shuaib, A., Carriere, K. C., & Nasser, A. M. (2004). Agreement between patient and proxy assessments of health-related quality of life after stroke using the EQ-5D and Health Utilities Index. Stroke, 35, 607–612.PubMedCrossRef Pickard, A. S., Johnson, J. A., Feeny, D. H., Shuaib, A., Carriere, K. C., & Nasser, A. M. (2004). Agreement between patient and proxy assessments of health-related quality of life after stroke using the EQ-5D and Health Utilities Index. Stroke, 35, 607–612.PubMedCrossRef
7.
go back to reference Epstein, A. M., Hall, J. A., Tognetti, J., Son, L. H., & Conant, L., Jr. (1989). Using proxies to evaluate quality of life. Can they provide valid information about patients’ health status and satisfaction with medical care? Medical Care, 27, S91–S98.PubMedCrossRef Epstein, A. M., Hall, J. A., Tognetti, J., Son, L. H., & Conant, L., Jr. (1989). Using proxies to evaluate quality of life. Can they provide valid information about patients’ health status and satisfaction with medical care? Medical Care, 27, S91–S98.PubMedCrossRef
8.
go back to reference Nunnally, J. (1978). Psychometric Theory. New York: Mc Graw-Hill. Nunnally, J. (1978). Psychometric Theory. New York: Mc Graw-Hill.
9.
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 in 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 in Health, 12, 1075–1083.PubMedCrossRef
10.
go back to reference Cieza, A., & Stucki, G. (2003). Content comparison of Health Related Quality of Life (HRQOL) instruments based on the International Classification of Functioning, Disability and Health (ICF). Quality of Life Research, 12, 750. Cieza, A., & Stucki, G. (2003). Content comparison of Health Related Quality of Life (HRQOL) instruments based on the International Classification of Functioning, Disability and Health (ICF). Quality of Life Research, 12, 750.
11.
go back to reference Moriello, C., Byrne, K., Cieza, A., Nash, C., Stolee, P., & Mayo, N. E. (2007). Mapping the Stroke Impact Scale (SIS-16) to the International Classification of Functioning, Disability and Health (ICF). Journal of Rehabilitation Medicine, 4, 40–45. Moriello, C., Byrne, K., Cieza, A., Nash, C., Stolee, P., & Mayo, N. E. (2007). Mapping the Stroke Impact Scale (SIS-16) to the International Classification of Functioning, Disability and Health (ICF). Journal of Rehabilitation Medicine, 4, 40–45.
12.
go back to reference Noonan, V. K., Kopec, J. A., Noreau, L., Singer, J., Chan, A., Masse, L. C., et al. (2009). Comparing the content of participation instruments using the International Classification of Functioning, Disability and Health. Health and quality of life outcomes, 7, 93.PubMedCrossRef Noonan, V. K., Kopec, J. A., Noreau, L., Singer, J., Chan, A., Masse, L. C., et al. (2009). Comparing the content of participation instruments using the International Classification of Functioning, Disability and Health. Health and quality of life outcomes, 7, 93.PubMedCrossRef
13.
go back to reference WHO. (2001). World Health Organization. International Classification of Functioning. Geneva652: Disability and Health Geneva6. WHO. (2001). World Health Organization. International Classification of Functioning. Geneva652: Disability and Health Geneva6.
14.
go back to reference Mayo, N. E., Poissant, L., Ahmed, S., Finch, L., Higgins, J., Salbach, N., et al. (2004). Incorporating the International Classification of Functioning, Disability and Health (ICF) into an Electronic Health Record to Create Indicators of Function: Proof-of-Concept Using the SF-12. Journal of the American Medical Informatics Association, 11, 514–522.PubMedCrossRef Mayo, N. E., Poissant, L., Ahmed, S., Finch, L., Higgins, J., Salbach, N., et al. (2004). Incorporating the International Classification of Functioning, Disability and Health (ICF) into an Electronic Health Record to Create Indicators of Function: Proof-of-Concept Using the SF-12. Journal of the American Medical Informatics Association, 11, 514–522.PubMedCrossRef
15.
go back to reference Wilson, I. B., & Cleary, P. D. (1995). Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. Journal of the American Medical Association, 273, 59–65.PubMedCrossRef Wilson, I. B., & Cleary, P. D. (1995). Linking clinical variables with health-related quality of life. A conceptual model of patient outcomes. Journal of the American Medical Association, 273, 59–65.PubMedCrossRef
16.
go back to reference Valderas, J. M., & Alonso, J. (2008). Patient reported outcome measures: a model-based classification system for research and clinical practice. Quality of Life Research, 17, 1125–1135.PubMedCrossRef Valderas, J. M., & Alonso, J. (2008). Patient reported outcome measures: a model-based classification system for research and clinical practice. Quality of Life Research, 17, 1125–1135.PubMedCrossRef
17.
go back to reference Cieza, A., Brockow, T., Ewert, T., Amman, E., Kollerits, B., Chatterji, S., et al. (2002). Linking health-status measurements to the international classification of functioning, disability and health. Journal of Rehabilitation Medicine, 34, 205–210.PubMedCrossRef Cieza, A., Brockow, T., Ewert, T., Amman, E., Kollerits, B., Chatterji, S., et al. (2002). Linking health-status measurements to the international classification of functioning, disability and health. Journal of Rehabilitation Medicine, 34, 205–210.PubMedCrossRef
18.
go back to reference Cieza, A., Geyh, S., Chatterji, S., Kostanjsek, N., Ustun, B., & Stucki, G. (2005). ICF linking rules: an update based on lessons learned. Journal of Rehabilitation Medicine, 37, 212–218.PubMedCrossRef Cieza, A., Geyh, S., Chatterji, S., Kostanjsek, N., Ustun, B., & Stucki, G. (2005). ICF linking rules: an update based on lessons learned. Journal of Rehabilitation Medicine, 37, 212–218.PubMedCrossRef
19.
go back to reference Mayo NE, Kuspinar A, Sheng L, and Scott S (2009) Revisiting the EQ-5D Health States in the Light of Performance and Questionnaire Information. Quality of Life Research (October 2009), A-33. Mayo NE, Kuspinar A, Sheng L, and Scott S (2009) Revisiting the EQ-5D Health States in the Light of Performance and Questionnaire Information. Quality of Life Research (October 2009), A-33.
20.
go back to reference Duncan, P. W., Lai, S. M., Bode, R. K., Perera, S., & DeRosa, J. (2003). Stroke Impact Scale-16: A brief assessment of physical function. Neurology, 60, 291–296.PubMed Duncan, P. W., Lai, S. M., Bode, R. K., Perera, S., & DeRosa, J. (2003). Stroke Impact Scale-16: A brief assessment of physical function. Neurology, 60, 291–296.PubMed
21.
go back to reference Noonan, V. K., Kopec, J. A., Noreau, L., Singer, J., & Dvorak, M. F. (2009). A review of participation instruments based on the International Classification of Functioning, Disability and Health. Disability and Rehabilitation, 8, 1–19.CrossRef Noonan, V. K., Kopec, J. A., Noreau, L., Singer, J., & Dvorak, M. F. (2009). A review of participation instruments based on the International Classification of Functioning, Disability and Health. Disability and Rehabilitation, 8, 1–19.CrossRef
22.
go back to reference Noonan, V. K., Miller, W. C., & Noreau, L. (2009). A review of instruments assessing participation in persons with spinal cord injury. Spinal Cord, 47, 435–446.PubMedCrossRef Noonan, V. K., Miller, W. C., & Noreau, L. (2009). A review of instruments assessing participation in persons with spinal cord injury. Spinal Cord, 47, 435–446.PubMedCrossRef
23.
go back to reference Post, M. W., de Witte, L. P., Reichrath, E., Verdonschot, M. M., Wijlhuizen, G. J., & Perenboom, R. J. (2008). Development and validation of IMPACT-S, an ICF-based questionnaire to measure activities and participation. Journal of Rehabilitation Medicine, 40, 620–627.PubMedCrossRef Post, M. W., de Witte, L. P., Reichrath, E., Verdonschot, M. M., Wijlhuizen, G. J., & Perenboom, R. J. (2008). Development and validation of IMPACT-S, an ICF-based questionnaire to measure activities and participation. Journal of Rehabilitation Medicine, 40, 620–627.PubMedCrossRef
24.
go back to reference Jette, A. M., Keysor, J., Coster, W., Ni, P., & Haley, S. (2005). Beyond function: predicting participation in a rehabilitation cohort. Archives of Physical Medicine and Rehabilitation, 86, 2087–2094.PubMedCrossRef Jette, A. M., Keysor, J., Coster, W., Ni, P., & Haley, S. (2005). Beyond function: predicting participation in a rehabilitation cohort. Archives of Physical Medicine and Rehabilitation, 86, 2087–2094.PubMedCrossRef
Metagegevens
Titel
The extent to which common health-related quality of life indices capture constructs beyond symptoms and function
Auteurs
Nancy E. Mayo
Carolina Moriello
Miho Asano
Susara van der Spuy
Lois Finch
Publicatiedatum
01-06-2011
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave 5/2011
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-010-9801-7