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Quality of Life Research

Gepubliceerd in:

01-04-2009

Disability meanings according to patients and clinicians: imagined recovery choice pathways

Auteurs: Margaret G. Stineman, Pamela M. Rist, Jibby E. Kurichi, Greg Maislin

Gepubliceerd in: Quality of Life Research | Uitgave 3/2009

Abstract

Objective

The purpose of this study was to explore how the meaning of disability varies between patients with acute-onset activity limitations and clinicians, and between males and females.

Methods

Seventy-nine patients undergoing inpatient rehabilitation and 93 practicing rehabilitation clinicians in the USA developed personal recovery choice pathways through recovery preference exploration (RPE). Imagining complete dependence in 18 activities as diverse as eating and expression, each individual determined an optimal sequence of recovery. This sequence was used to determine the relative value of each activity compared with the other 17. Three comparisons were made by calculating the mean absolute difference (MAD) in median utilities, including patients versus clinicians, male versus female patients, and male versus female clinicians. The MAD shows the relative magnitude of disparity between each pair.

Results

The MAD value between patients and clinicians was 3.4 times larger and 4.8 times larger than the MAD values between male and female patients and male and female clinicians, respectively.

Conclusions

The much larger difference in recovery preferences between patients and clinicians compared with differences between genders suggests that life contexts of being a patient with disabilities versus a clinician are more potent determinants of activity limitation perspectives than being a man or woman.

vorige artikel Differential item functioning (DIF) in the EORTC QLQ-C30: a comparison of baseline, on-treatment and off-treatment data

Baron, J., Asch, D. A., Fagerlin, A., Jepson, C., Loewenstein, G., Riis, J., et al. (2003). Effect of assessment method on the discrepancy between judgments of health disorders people have and do not have: A web study. Medical Decision Making, 23, 422–434. doi:10.1177/0272989X03257277.PubMedCrossRef

Sprangers, M. A., & Aaronson, N. K. (1992). The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: A review. Journal of Clinical Epidemiology, 45, 743–760. doi:10.1016/0895-4356(92)90052-O.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. doi:10.1023/A:1025119931010.PubMedCrossRef

Bach, J. R., & Barnett, V. (1994). Ethical considerations in the management of individuals with severe neuromuscular disorders. American Journal of Physical Medicine and Rehabilitation, 73, 134–140. doi:10.1097/00002060-199404000-00012.PubMedCrossRef

Bach, J. R., & Tilton, M. C. (1994). Life satisfaction and well-being measures in ventilator assisted individuals with traumatic tetraplegia. Archives of Physical Medicine and Rehabilitation, 75, 626–632. doi:10.1016/0003-9993(94)90183-X.PubMedCrossRef

World Health Organization. (2001). International classification of functioning, disability and health: ICF. Geneva, Switzerland: World Health Organization.

Nagel, E. (1979). Structure of science: Problems in the logic of scientific explanation. Indianapolis: Hackett.

Brown, M., & Gordon, W. A. (2004). Empowerment in measurement: “Muscle,” “voice,” and subjective quality of life as a gold standard. Archives of Physical Medicine and Rehabilitation, 85, S13–S20. doi:10.1016/j.apmr.2003.08.110.PubMedCrossRef

Mattingly, C., & Fleming, M. (1994). Clinical reasoning. Forms of inquiry in a therapeutic process. Philadelphia: FA Davis.

10.

Groce, N. E. (1999). Disability in cross-cultural perspective: Rethinking disability. Lancet, 354, 756–757. doi:10.1016/S0140-6736(99)06140-1.PubMedCrossRef

11.

Thorne, S., & McCormick, J. (1997). Deconstructing the gender neutrality of chronic illness and disability. Health Care for Women International, 18, 1–16.PubMedCrossRef

12.

Stineman, M. G., Maislin, G., Nosek, M., Fiedler, R., & Granger, C. V. (1998). Comparing consumer and clinician values for alternative functional states: Application of a new feature trade-off consensus building tool. Archives of Physical Medicine and Rehabilitation, 79, 1522–1529. doi:10.1016/S0003-9993(98)90413-0.PubMedCrossRef

13.

Kurz, A. E., Saint-Louis, N., Burke, J., & Stineman, M. G. (2008). Exploring the personal reality of disability and recovery: A tool for empowering the rehabilitation process. Qualitative Health Research, 18, 90–105. doi:10.1177/1049732307309006.PubMedCrossRef

14.

Stineman, M. G., Ross, R. N., Maislin, G., Marchuk, N., Hijirida, S., & Weiner, M. (2007). Recovery preference exploration: Analysis of patient feedback after imagined scenarios. American Journal of Physical Medicine and Rehabilitation, 86, 272–281. doi:10.1097/PHM.0b013e3180383acb.PubMedCrossRef

15.

Kogan, S. M., & Gale, J. E. (1997). Decentering therapy: Textual analysis of a narrative therapy session. Family Process, 36, 101–126. doi:10.1111/j.1545-5300.1997.00101.x.PubMedCrossRef

16.

Katz, S., Ford, A. B., Moskowitz, R. W., Jackson, B. A., & Jaffe, M. W. (1963). Studies of illness in the aged: The index of ADL: A standardized measure of biological and psychosocial function. Journal of the American Medical Association, 185, 914–919.PubMed

17.

Granger, C. V., Hamilton, B. B., Keith, R. A., Zielezny, M., & Sherwin, F. S. (1986). Advances in functional assessment for medical rehabilitation. Topics in Geriatric Rehabilitation, 1, 59–74.

18.

Hamilton, B. B., Granger, C. V., Sherwin, F. S., Zielezny, M., & Tashman, J. S. (1987). A Uniform National Data System for Medical Rehabilitation. Baltimore, MD: Paul H. Brookes.

19.

Rist, P. M., Freas, D. W., Maislin, G., & Stineman, M. G. (2008). Recovery from disablement: What functional abilities do rehabilitation professionals value the most? Archives of Physical Medicine and Rehabilitation, 89, 1600–1606. doi:10.1016/j.apmr.2007.11.060.PubMedCrossRef

20.

Torrance, G. W. (1987). Utility approach to measuring health-related quality of life. Journal of Chronic Diseases, 40, 593–600. doi:10.1016/0021-9681(87)90019-1.PubMedCrossRef

21.

Rapkin, B. D., & Schwartz, C. E. (2004). Toward a theoretical model of quality-of-life appraisal: Implications of findings from studies of response shift. Health and Quality of Life Outcomes, 2, 14. doi:10.1186/1477-7525-2-14.PubMedCrossRef

22.

Sox, H. C., Blatt, M. A., Higgins, M. C., & Marton, K. I. (1988). Medical decision making. Boston: Butterworth.

23.

Stineman, M. G., Rist, P., & Burke, J. (2009). Through the clinician’s lens: Objective and subjective views of disability. Qualitative Health Research, 19, 17–29.PubMedCrossRef

24.

Linacre, J. M., Heinemann, A. W., Wright, B. D., Granger, C. V., & Hamilton, B. B. (1994). The structure and stability of the functional independence measure. Archives of Physical Medicine and Rehabilitation, 75, 127–132.PubMed

25.

Stineman, M. G., Shea, J. A., Jette, A., Tassoni, C. J., Ottenbacher, K. J., Fiedler, R., et al. (1996). The functional independence measure: Tests of scaling assumptions, structure, and reliability across 20 diverse impairment categories. Archives of Physical Medicine and Rehabilitation, 77, 1101–1108. doi:10.1016/S0003-9993(96)90130-6.PubMedCrossRef

26.

Fonteyn, M., Kuipers, B., & Grobe, S. (1993). A description of think aloud method and protocol analysis. Qualitative Health Research, 3, 430–441. doi:10.1177/104973239300300403.CrossRef

27.

Bunch, W. H., & Dvonch, V. M. (1994). The “value” of functional independence measure scores. American Journal of Physical Medicine and Rehabilitation, 73, 40–43.PubMedCrossRef

28.

Stineman, M. G., Kurz, A. E., Kelleher, D., & Kennedy, B. L. (2007). The patient’s view of recovery: An emerging tool for empowerment through self-knowledge. Disability and Rehabilitation, 30, 1–10.

29.

Norman, G. (2003). Hi! How are you? Response shift, implicit theories and differing epistemologies. Quality of Life Research, 12, 239–249. doi:10.1023/A:1023211129926.PubMedCrossRef

30.

Sprangers, M. A., & Schwartz, C. E. (1999). Integrating response shift into health-related quality of life research: A theoretical model. Social Science and Medicine, 48, 1507–1515. doi:10.1016/S0277-9536(99)00045-3.PubMedCrossRef

31.

Stineman, M. G. (2001). A model of health environmental integration. Topics in Stroke Rehabilitation, 8, 34–45. doi:10.1310/0L5G-NQHY-GH4K-HV58.PubMedCrossRef

32.

Ditunno, P. L., Patrick, M., Stineman, M., & Ditunno, J. F. (2008). Who wants to walk? Preferences for recovery after SCI: A longitudinal and cross-sectional study. Spinal Cord, 46, 500–506. doi:10.1038/sj.sc.3102172.PubMedCrossRef

33.

Ditunno, P. L., Patrick, M., Stineman, M., Morganti, B., Townson, A. F., & Ditunno, J. F. (2006). Cross-cultural differences in preference for recovery of mobility among spinal cord injury rehabilitation professionals. Spinal Cord, 44, 567–575. doi:10.1038/sj.sc.3101876.PubMedCrossRef

34.

Browne, J. P., O’Boyle, C. A., McGee, H. M., Joyce, C. B., McDonald, N. J., O’Malley, K., et al. (1994). Individual quality of life in the healthy elderly. Quality of Life Research, 3, 235–244. doi:10.1007/BF00434897.PubMedCrossRef

35.

Joyce, C. R., Hickey, A., McGee, H. M., & O’Boyle, C. A. (2003). A theory-based method for the evaluation of individual quality of life: The SEIQoL. Quality of Life Research, 12, 275–280. doi:10.1023/A:1023273117040.PubMedCrossRef

36.

Donnelly, C., Eng, J. J., Hall, J., Alford, L., Giachino, R., Norton, K., et al. (2004). Client-centred assessment and the identification of meaningful treatment goals for individuals with a spinal cord injury. Spinal Cord, 42, 302–307. doi:10.1038/sj.sc.3101589.PubMedCrossRef

37.

Nisbett, R. E., Peng, K., Choi, I., & Norenzayan, A. (2001). Culture and systems of thought: Holistic versus analytic cognition. Psychological Review, 108, 291–310. doi:10.1037/0033-295X.108.2.291.PubMedCrossRef

Titel: Disability meanings according to patients and clinicians: imagined recovery choice pathways
Auteurs: Margaret G. Stineman
Pamela M. Rist
Jibby E. Kurichi
Greg Maislin
Publicatiedatum: 01-04-2009
Uitgeverij: Springer Netherlands
Gepubliceerd in: Quality of Life Research / Uitgave 3/2009
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI: https://doi.org/10.1007/s11136-009-9441-y

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Abstract

Objective

Methods

Results

Conclusions

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