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Quality of Life Research

Gepubliceerd in:

01-06-2014

Shifting responses in quality of life: People living with dialysis

Auteurs: Barbara A. Elliott, Charles E. Gessert, Pamela M. Larson, Thomas E. Russ

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

Abstract

Purpose

People assess their quality of life (QoL) using internal standards, values, and priorities. With health changes, QoL responses shift to reflect current realities. This qualitative study investigated the life experience and QoL assessments of people living with dialysis (PWDs).

Methods

Thirty-one interviews with 20 PWDs over the age of 70 (mean time on dialysis 34 months) and 11 family members investigated experience with disease and dialysis, related life challenges, medical decision-making, and future planning. Interviews were recorded, transcribed, and analyzed for themes and hypotheses using qualitative methods and description.

Results

When beginning dialysis, PWDs’ reported that life on dialysis was worth living and recalibrated their QoL assessments incorporating this standard into their daily lives. Three themes emerged as the disease progressed and dialysis became more difficult: PWDs first reported thriving on dialysis and then surviving with the support of dialysis, and when QoL was reported as poor, PWDs were reconsidering whether dialysis was still worth the life it was providing. Each of these steps involved changes in health circumstances, and PWDs explained their QoL assessments at each step using differing values and priorities. These steps in reconceptualization and reprioritization demonstrated PWDs’ Response Shift and eventually led to another (recalibrated) standard: Life with dialysis was no longer worth living.

Conclusions

Quality-of-life assessment is an on-going process for older dialysis patients. Clinicians should be alert for changes in subjective QoL statements as dialysis and underlying diseases progress. Response Shift explains these changes in assessment.

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Arnold, R. M., & Zeidel, M. L. (2007). Dialysis in frail elders: A role for palliative care. New England Journal of Medicine, 361(16), 1597–1598.CrossRef

Brown, E. A. (2010). Can quality of life be improved for the increasing numbers of older patients with end-stage kidney disease? Expert Review of Pharmacoeconomics and Outcomes Research, 10(6), 661–666.PubMedCrossRef

Jassal, S., & Watson, D. (2009). Dialysis in late life: Benefit or burden. Clinical Journal of the American Society of Nephrology., 4, 2008–2012.PubMedCrossRef

Kurella, M., Covinsky, K. E., Collins, A. J., & Chertow, G. M. (2007). Octogenarians and nonagenarians starting dialysis in the United States. Annals of Internal Medicine, 146, 177–183.PubMedCrossRef

Russ, A. J., & Kaufman, S. R. (2012). Discernment rather than decision-making among elderly dialysis patients. Sem Dial, 25(1), 31–32.CrossRef

U. S. Renal Data System. (2011). USRDS 2011 annual data report: Atlas of chronic kidney disease and end-stage renal disease in the United States. Bethesda, MD: National Institutes of Health National Institute of Diabetes and Digestive and Kidney Diseases.

Lazarus, R. S. (1999). Stress and emotion: A new synthesis. New York, New York: Springer.

Al-Arabi, S. (2006). Quality of life: Subjective descriptions of challenges to patients with end stage renal disease. Nephrology Nursing Journal, 33(3), 285–292.PubMed

Kaplan Denour, A. (1981). Prediction of adjustment to chronic hemodialysis. In N. B. Levy (Ed.), Psychonephrology I. psychological factors in hemodialysis and transplantation (pp. 117–132). New York: Plenum.CrossRef

10.

Kutner, N. G., & Jassal, S. V. (2002). Quality of life and rehabilitation of elderly dialysis patients. Sem Dial, 15(2), 107–112.CrossRef

11.

Wolcott, D. L., Nissenson, A. R., & Landsverk, J. (1988). Quality of life in chronic dialysis patients: Factors unrelated to dialysis modality. General Hospital Psychiatry, 10, 267–277.PubMedCrossRef

12.

Chan, R., Brooks, R., Erlich, J., Chow, J., & Suranyi, M. (2009). The effects of kidney-disease-related loss on long-term dialysis patients' depression and quality of life: Positive affect as a mediator. Clinical Journal of the American Society of Nephrology, 4, 160–167.PubMedCentralPubMedCrossRef

13.

Ferrans, C. E., & Powers, M. J. (1993). Quality of life of hemodialysis patients. American Nephrology Nursing Association Journal, 20(5), 575–581.

14.

Kimmel, P. L., Peterson, R. A., Weihs, K. L., Simmens, S. J., Boyle, D. H., Cruz, I., et al. (1995). Aspects of quality of life in hemodialysis patients. Journal of the American Society of Nephrology, 6(5), 1418–1426.PubMed

15.

Kimmel, P. L. (2000). Just whose quality of life is it anyway? Controversies and consistencies in measurements of quality of life. Kidney International, 57(Suppl 74), S113–S120.CrossRef

16.

Hays, R. D., Kallich, J. D., Mapes, D. L., et al. (1997). Kidney disease quality of life short form (KDQOL-SF), Version 1.3: A manual for use and scoring. Santa Monica, CA: Rand.

17.

US Congress Office of Technology Assessment. (1989). Life –sustaining technologies and the elderly: Excerpts of congressional OTA study. Nephrology News Issues, 3(10), 22. 31-34.

18.

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), 1–12.

19.

Krause, N. M., & Jay, G. M. (1994). What do global self-rated health items measure? Medical Care, 32, 930–942.PubMedCrossRef

20.

Sprangers, M. A. G., & Schwarz, C. E. (1999). Integrating response shift into health-related quality of life research: A theoretical model. Social Science and Medicine, 48, 1507–1515.PubMedCrossRef

21.

Schwartz, C. E., & Sprangers, M. A. G. (1999). Methodological approaches for assessing response shift in longitudinal health-related quality-of-life research. Social Science and Medicine, 48, 1531–1548.PubMedCrossRef

22.

Schwartz, C. E., & Rapkin, B. D. (2004). Reconsidering the psychometrics of quality of life assessment in light of response shift an appraisal. Health and Quality of Life Outcomes, 2(16), 1–11.

23.

Schwartz, C. E., Andresen, E. M., Nosek, M. A., Krahn, G. L., & RRTC Expert Panel on Health Status Measurement. (2007). Response shift theory: Important implications for measuring quality of life in people with disability. Archives of Physical Medicine and Rehabilitation, 88, 529–536.PubMedCrossRef

24.

Boucekine, M., Loundou, A., Baumstarck, K., Minaya-Flores, P., Pelletier, J., Ghattas, B., et al. (2013). Using the random forest method to detect a response shift in the quality of life of multiple sclerosis patients: A cohort study. BMC Medical Research Methodology, 13(20): http://www.biomedcentral.com/1471-2288/13/20.

25.

Daltroy, L. H., Larson, M. G., Eaton, H. M., Phillips, C. B., & Liang, M. H. (1999). Discrepancies between self-reported and observed patient function in the elderly: The influence of response shift and other factors. Social Science and Medicine, 48, 1549–1561.PubMedCrossRef

26.

Korfage, I. J., Hak, T., de Koning, H. J., & Essink-Bot, M. (2006). Patients’ perceptions of the side-effects of prostate cancer treatment: A qualitative interview study. Social Science and Medicine, 63, 911–919.PubMedCrossRef

27.

Neuman, H. B., Fuzesi, S., & Temple, L. K. (2012). Rectal caner patients’ quality of life with a temporary stoma: Shifting perspectives. Diseases of the Colon and Rectum, 55(11), 117–1124.CrossRef

28.

Rapkin, B. (2000). Personal goals and response shifts: Understanding the impact of illness and events on the quality of life of people living with AIDS. In C. E. Schwartz & M. A. G. Sprangers (Eds.), Adaptation to changing health: Response shift in quality of life research (pp. 53–71). Washington DC: American Psychological Association.CrossRef

29.

Sharpe, L., Butow, P., Smith, C., McConnell, D., & Clarke, S. (2005). Changes in quality of life in patients with advanced cancer: Evidence of response sift and response restriction. Journal of Psychosomatic Research, 58, 497–504.PubMedCrossRef

30.

Luoma, M., & Hakamies-Blomqvist, L. (2004). The meaning of quality of life in patients being teated for advanced breast cancer: A qualitative study. Psycho-oncology, 13, 729–739.PubMedCrossRef

31.

O’Boyle, C.A., Browne, J., Hickey, A., McGee, H.M., Joyce, C.R. (1995). Schedule for the evaluation of individual quality of life (SEIQoL): A direct weighting procedure for quality of life domains (SEIQoL-DW). Administration Manual, Dublin, Department of Psychology, Royal College of Sur.

32.

Abdel-Kader, K., Myaskovsky, L., Karpov, I., Shah, J., Hess, R., Dew, M. A., et al. (2009). Individual quality of life in chronic kidney disease: Influence of age and dialysis modality. Clinical Journal of the American Society of Nephrology, 4, 711–718.PubMedCentralPubMedCrossRef

33.

Ahmed, S., & Ring, L. (2008). Influence of response shift on evaluations of change in patient-reported outcomes. Expert Review of Pharmacoeconomics and Outcomes Research, 8(5), 479–489.PubMedCrossRef

34.

Creswell, J. W. (1998). Qualitative inquiry and research design: Choosing among five traditions. Thousand Oaks: Sage Publications.

35.

Sandelowski, M. (1994). Focus on qualitative methods: Notes on transcription. Research in Nursing and Health, 17, 311–314.PubMedCrossRef

36.

Frankland, J., & Bloor, M. (1999). Some issues arising in the systematic analysis of focus group materials. In R. S. Barbour & J. Kitzinger (Eds.), Developing focus group research: Politics, theory and practice (pp. 144–155). London: Sage.CrossRef

37.

Weinberger, M., Ferguson, J. A., Westmoreland, G., Mamlin, L. A., Segar, D. S., Eckert, G. J., et al. (1998). Can raters consistently evaluate the content of focus groups? Social Science and Medicine, 46(7), 929–933.PubMedCrossRef

Titel: Shifting responses in quality of life: People living with dialysis
Auteurs: Barbara A. Elliott
Charles E. Gessert
Pamela M. Larson
Thomas E. Russ
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/s11136-013-0600-9

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Abstract

Purpose

Methods

Results

Conclusions

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