Uncertainty and liver transplantation: Women with primary biliary cirrhosis before and after transplant

Women and Health

Volumn 50, Issue 4, 2010, Pages 359-375

  Lasker, Judith N ^a   Sogolow, Ellen D ^b   Olenik, Jennifer M ^c   Sass, David A ^d   Weinrieb, Robert M ^e  

^a LEHIGH UNIVERSITY   (United States)

^b Englewood ^*  (United States)

^c UNIVERSITY OF PENNSYLVANIA   (United States)

^d DREXEL UNIVERSITY COLLEGE OF MEDICINE   (United States)

^e HOSPITAL OF THE UNIVERSITY OF PENNSYLVANIA   (United States)

Author keywords

primary biliary cirrhosis; transplantation; uncertainty

Indexed keywords

ANXIETY; ARTICLE; BILIARY CIRRHOSIS; CHRONIC DISEASE; DEPRESSION; FATIGUE; FEMALE; HOSPITAL ADMISSION; HUMAN; LIVER FAILURE; LIVER TRANSPLANTATION; MENTAL STRESS; MIDDLE AGED; PATIENT SATISFACTION; PROGNOSIS; PSYCHOLOGICAL ASPECT; PSYCHOLOGICAL MODEL; QUALITY OF LIFE; UNCERTAINTY; LIVER CIRRHOSIS, BILIARY; PSYCHOLOGY;

ANXIETY; CHRONIC DISEASE; DEPRESSION; FATIGUE; FEMALE; HUMANS; LIVER CIRRHOSIS, BILIARY; LIVER FAILURE; LIVER TRANSPLANTATION; MIDDLE AGED; MODELS, PSYCHOLOGICAL; PATIENT SATISFACTION; PROGNOSIS; QUALITY OF LIFE; STRESS, PSYCHOLOGICAL; UNCERTAINTY; WAITING LISTS;

EID: 77955643139     PISSN: 03630242     EISSN: 15410331     Source Type: Journal    
DOI: 10.1080/03630242.2010.498750     Document Type: Article

References (53)

1. Babrow, A. S., and K. N. Kline. 2000. From ''reducing'' to ''coping with'' uncertainty: Reconceptualizing the central challenge in breast self-exams. Soc Sci & Medi 51:1805-16.
2. Bailey, D. E. Jr., L. Landerman, J. Barraso, P. Bixby, M. H. Mishel, A. J. Muir, et al. 2009. Uncertainty, symptoms, and quality of life in persons with chronic hepatitis C. Psychosomatics 50:138-46.
3. Basevitz, P., D. Pushkar, J. Chaikelson, M. Conway, and C. Dalton. 2008. Age-related differences in worry and related processes. Intl J Aging & Human Dev 66:283-305.
4. Berger, B., C. Estwing-Ferrans, and F. R. Lashley. 2001. Measuring stigma in people with HIV: Psychometric assessment of the HIV stigma scale. Res Nurs & Health 24:518-29.
5. Bjork, I., and D. Naden. 2008. Patients' experiences of waiting for a liver transplantation. Nurs Inquiry 15:289-298.
6. Brashers, D. E., D. J. Goldsmith, and E. Hsieh. 2002. Information seeking and avoiding in health contexts. Hum Commun Res 28:258-71.
7. Brown, J., J. H. Sorrell, J. McClaren, and J. W. Creswell. 2006. Waiting for a liver transplant. Qual Health Res 16:119-36.
8. Carver, C. S. 1997. You want to measure coping but your protocol's too long: Consider the brief COPE. Intl J Behav Medi 4:92-100.
9. Cauch-Dudek, K., S. Abbey, D. E. Stewart, and E. J. Heathcote. 1998. Fatigue in primary biliary cirrhosis. Gut 43:705-10.
10. Clayton, M. F., M. H. Mishel, and M. Belyea. 2006. Testing a model of symptoms, communication, uncertainty, and well-being, in older breast cancer survivors. Res Nurs & Health 29:18-39.
11. Cohen, M. H. 1993. The unknown and the unknowable-managing sustained uncertainty. Western J Nurs Res 15:77-96.
12. Donovan-Kicken, E., and J. J. Bute. 2008. Uncertainty of social network members in the case of communication-Debilitating illness or injury. Qual Health Res 18:5-18.
13. Dudley, T., D. Chaplin, C. Clifford, and D. J. Mutimer. 2007. Quality of life after liver transplantation for hepatitis c infection. Qual Life Res 16:1299-1308.
14. Eysenbach, G., and J. Wyatt. 2002. Using the internet for surveys and health research. J Med Internet Res 4:e13.
15. Fisk, J. D., P. G. Ritvo, L. Ross, D. A. Haase, T. J. Marrie, and W. F. Schlech. 1994. Measuring the functional impact of fatigue: Initial validation of the fatigue impact scale. Clin Infec Dis 18:79-83
16. Folkman, S., C. Schaefer, and R. S. Lazarus. 1979. Cognitive processes as mediators of stress and coping. In Human stress and cognition: An information-processing approach, ed. V. Hamilton and D. M. Warburton, pp. 265-298. New York: John Wiley & Sons.
17. Freeman, R. B. Jr., R. H. Wiesner, J. P. Roberts, S. McDiarmid, D. M. Dykstra, and R. M. Merion. 2004. Improving liver allocation: MELD and PELD. Am J Transplant 4:114-31.
18. Friedman, L. S., E. B. Keeffe, and E. R. Schiff. 2004. Handbook of liver disease. Edinburgh: Churchill Livingstone.
19. Gautam, M., R. Cheruvattath, and V. Balon. 2006. Recurrence of autoimmune liver disease after liver transplantation: A systematicreview. Liver Transplant 12:1813-24.
20. Gershwin, M. E., and I. R. Mackay. 2008. The causes of primary biliary cirrhosis: Convenient and inconvenient truths. Hepatology 47:737-45.
21. Gil, K. M., M. H. Mishel, M. Belyea, B. Germino, L. S. Porter, and M. Clayton. 2006. Benefits of the uncertainty management intervention for African-American and White older breast cancer survivors: 20-Month outcomes. Intl J Behav Medi 13:286-94.
22. Gordon, J. L. 2001. Role of uncertainty in the psychosocial adaptation to end-stage renal disease in renal transplant patients (Ph.D. dissertation, Walden University, 2001). Disserta Abstr Intl 62:5636.
23. Gralnek, I. M., R. D. Hays, A. Kilbourne, H. R. Rosen, E. B. Keeffe, L. Artinian, et al. 2000. Development and evaluation of the liver disease quality of life instrument in persons with advanced chronic liver disease-The LDQOL 1.0. Am J Gastroenterology 95:3552-65.
24. Holmes, D. S., and B. K. Houston. 1974. Effectiveness of situational redefinition and affective isolation in coping with stress. J Person & Soc Psychol 29:212-18.
25. Johnson, L. M., A. J. Zautra, and M. C. Davis. 2006. The role of illness uncertainty on coping with fibromyalgia symptoms. Health Psychol 25:696-703.
26. Kim, W. R., K. D. Lindor, M. Malinchoc, J. L. Petz, R. Jorgensen, and E. R. Dickson. 2000. Reliability and validity of the NIDDK-QA instrument in the assessment of quality of life in ambulatory patients with cholestatic liver disease. Hepatology 32:924-9.
27. Lasker, J. N., E. D. Sogolow, L. M. Short, D. A. Sass, and R. Weinrieb. 2010. The impact of biopsychosocial factors on quality of life: Women with PBC on waiting list and post liver transplantation. Br J Health Psychol. Under review.
28. Lasker, J. N., E. D. Sogolow, and C. Rich. In preparation. Chronic liver disease in women: Social quality of life pre and post transplant.
29. Maikranz, J. M., R. G. Steele, M. L. Dreyer, A. C. Stratman, and J. A. Bovaird. 2006. The relationship of hope and illness-related uncertainty to emotional adjustment and adherence among pediatric renal and liver transplant recipients. J Pediatr Psychol 32:571-81.
30. Martin, S. C., A. M. Stone, A. M. Scott, and D. E. Brashers. 2010. Medical, personal, and social forms of uncertainty across the transplantation trajectory. Qual Health Res 20:182-96.
31. Mauro, A. M. 2010. Long-term follow-up study of uncertainty and psychosocial adjustment among implantable cardioverter defibrillator recipients. Int J Nurs Stud. Mar 8. [Epub ahead of print]
32. Mishel, M. H. 1981. The measurement of uncertainty in illness. Nurs Res 30:258-63.
33. Mishel, M. H. 1983. Adjusting the fit: Development of uncertainty scales for specific clinical populations. Western J Nurs Res 5:355-70.
34. Mishel, M. H. 1988. Uncertainty in illness. J Nurs Scholar 20:225-32.
35. Mishel, M. H. 1990. Reconceptualization of the uncertainty in illness theory. J Nurs Scholar 22:256-62.
36. Mishel, M. H. 1997. Uncertainty in illness scales manual. Unpublished. University of North Carolina, Chapel Hill.
37. Mishel, M. H. 1999. Uncertainty in chronic illness. Ann Rev Nurs Res 17:269-94.
38. Mishel, M. H., and C. J. Braden. 1988. Finding meaning: Antecedents of uncertainty in illness. Nurs Res 37:98-107.
39. Neipp, M., B. Karavul, S. Jackobs, V. A. Meyer, N. Richter, T. Becker, et al. 2006. Quality of life in adult transplant recipients more than 15 years after kidney transplantation. Transplantation 81:1640-4.
40. OPTN online database. 2009. The Organ Procurement and Transplantation Network (OPTN). Retrieved August 15, 2009, from http://optn.transplant.hrsa.gov/
41. Parikh-Patel, A., E. Gold, I. R. Mackay, and M. E. Gershwin. 1999. The geoepidemiology of primary biliary cirrhosis: Contrasts and comparisons with the spectrum of autoimmune diseases. Clin Immunol 91:206-18.
42. Physicians' desk reference (PDR). 2003. Montvale, NJ: Thomson PDR.
43. Radloff, L. S. 1977. The CES-D scale: A self-report depression scale for research in the general population. Appl Psychol Meas 1:385-401.
44. Rothenhausler, H. B., S. Ehrentraut, H. P. Kapfhammer, C. Lang, R. Zachoval, M. Bilzer, et al. 2002. Psychiatric and psychosocial outcome of orthotopic liver transplantation. Psychother & Psychosom 71:285-97.
45. Royer, A. 2000. Uncertainty: A key characteristic of chronic illness and a major problem for managed care. In Health, illness and use of care: The impact of social factors, ed. J. J. Kronenfeld, pp. 269-286. Bingley, UK: Emerald Group Publishing.
46. Russell, C. L., and K. Brown. 2002. The effects of information and support on indi viduals awaiting cadaveric kidney transplantation. Progr Transplant 12:201-7.
47. Rybarczyk, B., K. L. Grady, D. C. Naftel, J. K. Kirklin, C.White-Williams, J. Kobashigawa, et al. 2007. Emotional adjustment 5 years after heart transplant: A multisite study. Rehab Psychol 52:206-14.
48. Schreibman, I., and A. Regev. 2006. Recurrent primary biliary cirrhosis after liver transplantation-The disease and its management. Medscape Gen Medi 8:30.
49. Sogolow, E. D., J. N. Lasker, and L. M. Short. 2008. Fatigue as a major predictor of quality of life in women with autoimmune liver disease. The case of primary biliary cirrhosis. Women's Health Iss 18:336-42.
50. Sylvestre, P. B., K. P. Batts, L. J. Burgart, J. J. Poterucha, and R. H. Wiesner. 2003. Recurrence of primary biliary cirrhosis after liver transplantation: Histologic estimate of incidence and natural history. Liver Transplant 9:1086-93.
51. Ware, J. E., M. Kosinski, and J. E. Dewey. 2000. How to score version two of the SF-36 health survey. Lincoln, RI: QualityMetric Incorporated.
52. Yorke, J., and E. Cameron-Traub. 2008. Patients' perceived care needs whilst waiting for a heart or lung transplant. J Clin Nurs 17:78-87.
53. Zimet, G. D., N. W. Dahlem, S. G. Zimet, and G. K. Farley. 1988. The multidimen- sional scale of perceived social support. J Person Assess 52:30-41.