Abstract
Introduction
Transplantation is a life-saving option for patients with liver disease. However, recovery is variable. Impairments in physical health, emotional wellbeing and quality of life are reported. Quality of life may be worse after transplantation for hepatitis C virus (HCV) infection.
Objective
To identify factors that could impact on quality of life after liver transplantation for HCV infection.
Methods
A qualitative design was used. Data were collected by in-depth interview. Colaizzi’s framework for data analysis was used.
Results
Varying levels of physical and psychological disability persist for many years after liver transplantation. Participants described living productive and meaningful lives. Many reported a more positive outlook on life since transplantation. Many felt stigmatised by the association of liver disease with alcohol/drug misuse. Participants described the uncertainty of life after transplantation. While all expressed gratitude to the donor, emotional responses to the donation varied.
Conclusions
Transplant recipients exchange one health state for another. Pre-transplant preparation should encourage realistic expectations of life after transplantation. Before transplantation, potential recipients should be given an opportunity to discuss the donation process. This may reduce the burden of emotional debt experienced by some recipients. Feelings of stigma and future uncertainty may be worse for transplant recipients with HCV. A qualitative approach can provide deeper insight into issues affecting quality of life after transplantation for HCV, and explain some of the ambiguous and contradictory findings of previous quantitative studies.
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Abbreviations
- QoL:
-
Quality of life
- HRQoL:
-
Health-related quality of life
- SF-36:
-
Short Form-36
- HCV:
-
Hepatitis C virus infection
- HIV:
-
Human immunodeficiency virus
References
Baldwin, S., Godfrey, C., & Propper, C. (1994). Quality of life. New York: Routledge.
Bowling, A. (2001). Measuring disease: A review of disease-specific quality of life measurement scales (2nd ed.). Buckingham: Open University Press.
Fallowfield, L. (1990). The quality of life: The missing measurement in healthcare. London: Souvenir Press.
Seed, P., & Lloyd, G. (1997). Quality of life. London: Jessica Kingsley Publishers.
Culyer, A. J. (1994). Commodities, characteristics of commodities, characteristics of people, utilities, and the quality of life. In S. Baldwin, C. Godfrey & C. Propper (Eds.), Quality of life (pp. 9–27). New York: Routledge.
World Health Organisation Quality Of Life (WHOQOL) Group (1998). The World Health Organisation Quality of Life Assessment (WHOQOL): Development and General Psychometric Properties. Social Science and Medicine, 46(12), 1569–1585.
Jenkinson, C. (1994). Measuring health and medical outcomes: An overview. In C Jenkinson (Ed.), Measuring health and medical outcomes (pp. 1–6). London: UCL Press.
Bowling, A. (2002). Research methods in health: Investigating health and health services (2nd ed.). Buckingham: Open University Press.
Carr, A. J., & Higginson, I. J. (2001). Are quality of life measures patient centred? British Medical Journal, 322, 1357–1360.
Draper, P. (1992). Quality of life as quality of being: An alternative to the subject-object dichotomy. Journal of Advanced Nursing, 17, 965–970.
Carr, A. J., Gibson, B., & Robinson, G. (2001). Is quality of life determined by expectations or experience? British Medical Journal, 322, 1240–1243.
Ware, J. E. Jr, & Sherbourne, C. D. (1992). The MOS 36-Item short-form health survey (SF-36): 1. Conceptual framework and item selection. Medical Care, 30(6), 473–483.
Hicks, F. D., Larson, J. L., & Ferrans, C. E. (1992). Quality of life after liver transplant. Research in Nursing and Health, 15, 111–119.
Collis, I., Burroughs, A., Rolles, K., & Lloyd, G. (1995). Psychiatric and social outcome of liver transplantation. British Journal of Psychiatry, 166, 521–524.
De Bona, M., Ponton, P., Ermani, M., Iemmolo, R. M., Feltrin, A., Boccagni, P. et al. (2000). The impact of liver disease and medical complications on quality of life and psychological distress before and after liver transplantation. Journal of Hepatology, 33, 609–615.
Levy, M. F., Jennings, L., Abouljoud, M. S., Mulligan, D. C., Goldstein, R. M., Husberg, B. S. et al. (1995). Yes, there is (quality of) life after liver transplantation. Transplantation, 59, 515–518.
Nickel, R., Wunsch, A., Egle, U. T., Lohse, A. W., & Otto, G. (2002). The Relevance of anxiety, depression, and coping in patients after liver transplantation. Liver Transplantation, 8(1), 63–71.
Riether, A. M., Smith, S. L., Lewison, B. J., Cotsonis, G. A., & Epstein, C. M. (1992). Quality-of-life changes and psychiatric and neurocognitive outcome after heart and liver transplantation. Transplantation, 54(3), 444–450.
Robertson, G. (1999). Individuals’ perception of their quality of life following a liver transplant: An exploratory study. Journal of Advanced Nursing, 30(2), 497–505.
Singh, N., Gayowski, T., Wagener, M. M., & Marino, I. R. (1999). Quality of life, functional status, and depression in male liver transplant recipients with recurrent viral hepatitis C. Transplantation, 67(1), 69–72.
Bravata, D. M., Olkin, I., Barnato, A. E., Keeffe, E. B., & Owens, D. K. (1999). Health-related quality of life after liver transplantation: A meta-analysis. Liver Transplantation and Surgery, 5(4), 318–331.
Bunzel, B., & Laederach-Hoffmann, K. (2000). Solid organ transplantation: Are there predictors for posttransplant noncompliance? A literature overview. Transplantation, 70, 711–716.
Holzner, B., Kemmler, G., Kopp, M., Dachs, E., Kaserbacher, R., Spechtenhauser, B. et al. (2001). Preoperative expectations and postoperative quality of life in liver transplant survivors. Archives of Physical and Medical Rehabilitation, 82, 73–79.
Feurer, I. D., Kelly Wright, J., Payne, J. L., Kain, A. C., Wise, P. E., Hale, P. et al. (2002). Effects of hepatitis C virus infection and its recurrence after liver transplantation on functional performance and health-related quality of life. Journal of Gastrointestinal Surgery, 6(1), 108–115.
Paterson, D. L., Gayowski, T., Wannstedt, C. F., Wagener, M. M., Marino, I. R., Vargas, T. et al. (2000). Quality of life in long-term survivors after liver transplantation: Impact of recurrent viral hepatitis C virus hepatitis. Clinical Transplantation, 14, 48–54.
Carr, L. T. (1994). The strengths and weaknesses of quantitative and qualitative research: What method for nursing? Journal of Advanced Nursing, 20, 716–721.
Coyle, J., & Williams, B. (2000). An exploration of the epistemological intricacies of using qualitative data measurement to develop a quantitative measure of user views of health care. Journal of Advanced Nursing, 31(5), 1235–1243.
Hicks, C., & Hennessey, D. (1997). Mixed messages in nursing research: Their contribution to the persisting hiatus between evidence and practice. Journal of Advanced Nursing, 25, 595–601.
Polit, D., & Hungler, B. P. (1999). Nursing research: Principles and methods (6th ed.) Philadelphia: Lippincott.
Proctor, S. (1998). Linking philosophy and method in the research process: The case for realism. Nurse Researcher, 5(4), 73–90.
Forsberg, A., Backman, L., & Moller, A. (2000). Experiencing liver transplantation: A phenomenological approach. Journal of Advanced Nursing, 32(2), 327–334.
Johnson, C. D., & Hathaway, D. K. (1996). The lived experience of end-stage liver failure and liver transplantation. Journal of Transplant Coordination, 6(3), 130–133.
Jonsen, E., Athlin, E., & Suhr, O. (1998). Familial amyloidotic patients’ experience of the disease and of liver transplantation. Journal of Advanced Nursing, 27, 52–58.
Thomas, D. J. (1995). The lived experience of people with liver transplants. Journal of Transplant Coordination, 5, 65–71.
Wainwright, S. P. (1995). The transformational experience of liver transplantation. Journal of Advanced Nursing, 22, 1068–1076.
Wiesner, R. H., Sorrell, M., Villamil, F., and the International Transplantation Society Expert Panel (2003). Report of the first international liver transplantation society expert panel consensus conference on liver transplantation and hepatitis C. Liver Transplantation, 9(11, Suppl 3), S1–S9.
Forman, L. M., Lewis, J. D., Berlin, J. A., Feldman, H. I., & Lucey, M. R. (2002). The association between hepatitis C infection and survival after orthotopic liver transplantation. Gastroenterology, 122, 889–896.
Valle, R. S., & King, M. (1978). Existential-phenomenological alternatives for psychology. New York: Oxford University Press.
Crotty, M. (1996). Phenomenology and nursing research. Melbourne: Churchill Livingstone.
Britten, N. (1995). Qualitative interviews in medical research. British Medical Journal, 311, 251–253.
Oppenheim, A. N. (1992). Questionnaire design, interviewing and attitude measurement (2nd ed.). London: Continuum.
Colaizzi, P. F. (1978). Psychological research as the phenomenologist views it. In R. S. Valle, & M. King (Eds.), Existential-phenomenological alternatives for psychology (pp. 48–71). New York: Oxford University Press.
Silverman, D. (2002). Interpreting qualitative data: Methods for analysing talk, text and interaction (2nd ed.). London: Sage Publications Ltd.
Fontana, A., & Frey, J. H. (1998). Interviewing: The art of science. In N. K. Denzin & Y. S. Lincoln (Eds.), Collecting and interpreting qualitative materials (pp 47–78). London: Sage Publications.
Mays, N., & Pope, C. (1995). Rigour and qualitative research. British Medical Journal, 311, 109–112.
Meadows, L. M., & Morse, J. M. (2001). Constructing evidence within the qualitative project. In J. M. Morse, J. M. Swanson & A. J. Kuzel (Eds.), The nature of qualitative evidence (pp. 187–200). London: Sage Publications.
Price, C. E., Lowe, D., Cohen, A. T., Reid, F. D.A., Forbes, G. M., McEwen, J. et al. (1995). Prospective study of the quality of life in patients assessed for liver transplantation: Outcome in transplanted and not transplanted groups. Journal of the Royal Society of Medicine, 88, 131–135.
Andrykowski, M. A., Brady, M. J., Greiner, C. B., Altmaier, E. M., Burish, T. G., Antin, J. H. et al. (1994). Returning to normal following bone marrow transplantation: Outcomes, expectations and informed consent. Bone Marrow Transplantation, 15, 573–581.
Cleemputt, I. N., Kesteloot, K., De Geest, S., Dobbels, F., & Vanrenterghem, Y. (2003). Health professional perceptions of health status after renal transplantation: A comparison with transplantation candidates expectations. Transplantation, 76, 176–182.
Joralemon, D., & Fujinaga, K. M. (1996). Studying the quality of life after organ transplantation: Research problems and solutions. Social Science and Medicine, 44(9), 1259–1269.
Neuberger, J., Adams, D., McMaster, P., Maidment, A., & Speed, M. (1998). Assessing priorities for allocation of donor liver grafts: A survey of public and clinicians. British Medical Journal, 317, 172–175.
Koocher, G. P., & O’Malley, J. E. (1981). The Damocles syndrome: Psychosocial consequences of surviving childhood cancer. New York: McGraw-Hill.
Brashers, D. E., Neidig, J. L., Cradillo, L. W., Dobbs, L. K., Russell, J. A., & Haas, S. M. (1999). ‘In an important way, I did die’: Uncertainty and revival in persons living with HIV or AIDS. AIDS Care, 11(2), 201–219.
Miller, C. (1997). The lived experience of relapsing multiple sclerosis: A phenomenological study. Journal of Neuroscience Nursing, 29(5), 294–304.
Muzzin, L. J., Anderson, N. J., Figuerido, A. T., & Guelis, S. O. (1994). The experience of cancer. Social Science and Medicine, 38(9), 1201–1208.
McCain, N. L., & Cella, D. F. (1995). Correlates of stress in HIV disease. Western Journal of Nursing Research, 17, 141–155.
Wineman, N. M., Schwetz, K. M., Zeller, R., & Cyphert, J. (2003). Longitudinal analysis of illness uncertainty, coping, hopefulness and mood during participation in a clinical drug trial. Journal of Neuroscience Nursing, 35(2), 100–106.
Lowton, K. (2003). ‘Double or quits’: Perceptions and management of organ transplantation by adults with cystic fibrosis. Social Science and Medicine, 56, 1355–1367.
Sanner, M. A. (2003). Transplant recipients’ conceptions of three key phenomena in transplantation: The organ donation, the organ donor, and the organ transplant. Clinical Transplantation, 17, 391–400.
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Dudley, T., Chaplin, D., Clifford, C. et al. Quality of life after liver transplantation for hepatitis C infection. Qual Life Res 16, 1299–1308 (2007). https://doi.org/10.1007/s11136-007-9244-y
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DOI: https://doi.org/10.1007/s11136-007-9244-y