What is the patient experience in advanced liver disease? A scoping review of the literature

BMJ Supportive and Palliative Care

Volumn 5, Issue 5, 2015, Pages 471-480

  Kimbell, Barbara ^a   Murray, Scott A ^a  

^a UNIVERSITY OF EDINBURGH   (United Kingdom)

Author keywords

[No Author keywords available]

Indexed keywords

ADULT; COMPLICATION; DEPRESSION; FATIGUE; HUMAN; LIVER DISEASE; PSYCHOLOGY; QUALITY OF LIFE;

ADULT; DEPRESSION; FATIGUE; HUMANS; LIVER DISEASES; QUALITY OF LIFE;

EID: 84949465932     PISSN: 2045435X     EISSN: 20454368     Source Type: Journal    
DOI: 10.1136/bmjspcare-2012-000435     Document Type: Review

References (59)

1. World Health Organisation. WHO European health for all database. 2012 (updated Jan 2013). http://data.euro.who.int/hfadb (accessed 19 Jun 2013).
2. British Association for the Study of the Liver and British Society of Gastroenterology. A time to act: improving liver health and outcomes in liver disease. The National Plan for Liver Services UK, 2009.
3. Moore K, Sheron N. Why we need a national strategy for liver disease. Br J Hosp Med (Lond) 2009;70:674-75.
4. National End of Life Care Intelligence Network. Deaths from liver disease: Implications for end of life care in England, 2012. www.endoflifecare-intelligence.org.uk (accessed 19 Jun 2013).
5. Boyd K, Kimbell B, Murray S, et al. Living and dying well with end-stage liver disease: time for palliative care? Hepatology 2012;55:1650-51.
6. Hope A, Morrison R. Integrating palliative care with chronic liver disease care. J Palliat Care 2011;27:20-7.
7. Arksey H, O'Malley L. Scoping studies: towards a methodological framework. Int J Soc Res Method. 2005;8:19-32.
8. Davis K, Drey N, Gould D. What are scoping studies? A review of the nursing literature. Int J Nurs Stud 2009;46:1386-400.
9. Rumrill PD, Fitzgerald SM, Merchant WR. Using scoping literature reviews as a means of understanding and interpreting existing literature. Work 2010;35:399-404.
10. Martin L, Sheridan M, Younossi Z. The impact of liver disease on health-related quality of life: a review of the literature. Curr Gastroenterol Rep 2002;4:79-83.
11. Roth K, Lynn J, Zhong ZS, et al. Dying with end stage liver disease with cirrhosis: insights from SUPPORT. J Am Geriatr Soc 2000;48:S122-S30.
12. Bianchi G, Loguercio C, Sgarbi D, et al. Reduced quality of life of patients with hepatocellular carcinoma. Dig Liver Dis 2003;35:46-54.
13. Chandok N, Watt KDS. Pain management in the cirrhotic patient: the clinical challenge. Mayo Clin Proc 2010;85:451-8.
14. Kalaitzakis E, Simren M, Olsson R, et al. Gastrointestinal symptoms in patients with liver cirrhosis: associations with nutritional status and health-related quality of life. Scand J Gastroenterol 2006;41:1464-72.
15. Panagaria N, Varma K, Nijhawan S, et al. Quality of life and nutritional status in alcohol addicts and patients with chronic liver disease. Trop Gastroenterol 2007;28:171-5.
16. Van der Plas S, Hansen B, de Boer J, et al. Generic and disease-specific health related quality of life in non-cirrhotic, cirrhotic and transplanted liver patients: a cross-sectional study. BMC Gastroenterol 2003;3.
17. Van der Plas SM, Hansen BE, de Boer JB, et al. Generic and disease-specific health related quality of life of liver patients with various aetiologies: a survey. Qual Life Res 2007;16:375-88.
18. Huet PM, Deslauriers J, Tran A, et al. Impact of fatigue on the quality of life of patients with primary biliary cirrhosis. Am J Gastroenterol 2000;95:760-7.
19. Jones DEJ, Gray JC, Newton J. Perceived fatigue is comparable between different disease groups. QJM 2009;102:617-24.
20. Wainwright SP. Transcending chronic liver disease: a qualitative study. J Clin Nurs 1997;6:43-5.
21. Cordoba J, Cabrera J, Lataif L, et al. High prevalence of sleep disturbance in cirrhosis. Hepatology 1998;27:339-45.
22. Mostacci B, Ferlisi M, Baldi Antognini A, et al. Sleep disturbance and daytime sleepiness in patients with cirrhosis: a case control study. Neurol Sci 2008;29:237-40.
23. Marchesini G, Bianchi G, Amodio P, et al. Factors associated with poor health-related quality of life of patients with cirrhosis. Gastroenterology 2001;120:170-78.
24. Durazzo M, Premoli A, Di Bisceglie C, et al. Male sexual disturbances in liver diseases: what do we know? J Endocrinol Invest 2010;33:501-5.
25. Steel J, Hess SA, Tunke L, et al. Sexual functioning in patients with hepatocellular carcinoma. Cancer 2005;104:2234-43.
26. Younossi ZM, Boparai N, Price LL, et al. Health-related quality of life in chronic liver disease: the impact of type and severity of disease. Am J Gastroenterol 2001;96:2199-205.
27. Bianchi G, Marchesini G, Nicolino F, et al. Psychological status and depression in patients with liver cirrhosis. Dig Liver Dis 2005;37:593-600.
28. Kim SH, Oh EG, Lee WH. Symptom experience, psychological distress, and quality of life in Korean patients with liver cirrhosis: a cross-sectional survey. Int J Nurs Stud 2006;43:1047-56.
29. Fritz E, Hammer J. Gastrointestinal symptoms in patients with liver cirrhosis are linked to impaired quality of life and psychological distress. Eur J Gastroenterol Hepatol 2009;21:370-75.
30. Blackburn P, Freeston M, Baker CR, et al. The role of psychological factors in the fatigue of primary biliary cirrhosis. Liver Int 2007;27:654-61.
31. Gutteling JJ, Duivenvoorden HJ, Busschbach JJV, et al. Psychological determinants of health-related quality of life in patients with chronic liver disease. Psychosomatics 2010;51:157-65.
32. Singh N, Gayowski T, Wagener MM, et al. Depression in patients with cirrhosis: impact on outcome. Dig Dis Sci 1997;42:1421-27.
33. Sogolow E, Lasker J, Sharim R, et al. Stigma and liver disease. Illn Crisis Loss 2010;18:229-55.
34. Pantiga C, Rodrigo L, Cuesta M, et al. Cognitive deficits in patients with hepatic cirrhosis and in liver transplant recipients. J Neuropsychiatry Clin Neurosci 2003;15:84-9.
35. Collie A. Cognition in liver disease. Liver Int 2005;25:1-8.
36. Groeneweg M, Quero J, De Bruijn I, et al. Subclinical hepatic encephalopathy impairs daily functioning. Hepatology 1998;28:45-9.
37. Fan S-Y, Eiser C. Illness experience in patients with hepatocellular carcinoma: an interpretative phenomenological analysis study. Eur J Gastroenterol Hepatol 2012;24:203-8.
38. Afendy A, Kallman JB, Stepanova M, et al. Predictors of health-related quality of life in patients with chronic liver disease. Aliment Pharmacol Ther 2009;30:469-76.
39. Montali L, Frigerio A, Riva P, et al. 'It's as if PBC didn't exist': the illness experience of women affected by primary biliary cirrhosis. Psychol Health 2011;26:1429-45.
40. Osborne L, Bindemann N, Noble J, et al. Changes in the key areas of quality of life associated with age and time since diagnosis of long-term conditions. Chronic Illness 2012;8:112-20.
41. Boyd K, Murray S. Recognising and managing key transitions in end of life care. BMJ 2010;341:4863.
42. Kanwal F, Gralnek I, Hays RD, et al. Health-related quality of life predicts mortality in patients with advanced chronic liver disease. Clin Gastroenterol Hepatol 2009;7:793-99.
43. Cirrincione R, Taliani G, Caporaso N, et al. Quality of life assessment in chronic liver disease. Hepatogastroenterology 2002;49:813-16.
44. Carr AJC, Higginson IJ. Are quality of life measures patient centred? BMJ 2001;322:1357-60.
45. Lowe D, O'Grady J, McEwen J, et al. Quality of life following liver transplantation: preliminary report. J Royal Col Phys London 1990;24:43-6.
46. Benz C. Patients' perspectives. In: Addington-Hall J, Higginson Ieds. Palliative care for non-cancer patients. Oxford: Oxford University Press, 2001:198-209.
47. Price CE, Lowe D, Cohen AT, et al. Prospective study of the quality of life in patients assessed for liver transplantation: outcome in transplanted and not transplanted groups. J R Soc Med 1995;88:130-5.
48. Murray S, Kendall M, Boyd K, et al. Illness trajectories and palliative care. BMJ 2005;330:1007-11.
49. Murray S, Kendall M, Carduff E, et al. Use of serial qualitative interviews to understand patients' evolving experiences and needs. BMJ 2009;339:b3702.
50. Lumby J. Liver transplantation: the death/life paradox. Int J Nurs Pract 1997;3:231-38.
51. Bjørk IT, Nåden D. Patients' experiences of waiting for a liver transplantation. Nurs Inq 2008;15:289-98.
52. Bornschlegel K, Crotty K, Sahl S, et al. Unmet needs among people reported with Hepatitis C. J Publ Health Manag Pract 2011;17:E9-17.
53. Brown J, Sorrell JH, McClaren J, et al. Waiting for a liver transplant. Qual Health Res 2006;16:119-36.
54. Forsberg A, Baeckmann L, Moeller A. Experiencing liver transplantation: a phenomenological approach. J Adv Nurs 2000;32:327-34.
55. Johnson CD, Hathaway DK. The lived experience of end-stage liver failure and liver transplantation. J Transplant Coord 1996;6:130-33.
56. Jorgensen R. A phenomenological study of fatigue in patients with primary biliary cirrhosis. J Adv Nurs 2006;55:689-97.
57. Lasker J, Sogolow E, Sharim R. For better and for worse: family and friends' responses to chronic liver disease. Illn Crisis Loss 2005;13:249-66.
58. Robertson G. Individuals' perception of their quality of life following a liver transplant: an exploratory study. J Adv Nurs 1999;30:497-505.
59. Kvale S. Interviews. London: Sage, 1996.