Abstract
Most studies on health related quality of life (HRQoL) of chronic liver patients were done in small clinical populations or restricted to one aetiology or disease stage. There is still a need for a study in a large liver patient population with various aetiologies and disease stages, approaching a population-based study. We evaluated the impact of liver disease aetiology on generic HRQoL, disease-specific HRQoL and fatigue and we compared HRQoL and fatigue between aetiological groups and healthy Dutch controls. Members of the Dutch liver patient association completed the Liver Disease Symptom Index, Short Form-36, and Multidimensional Fatigue Index-20. We compared the HRQoL between patients with viral hepatitis, autoimmune hepatitis, cholestatic diseases, hemochromatosis and other liver diseases by linear, ordinal and logistic regression, corrected for disease stage and other significant factors. Viral hepatitis patients showed a worse mental health than other aetiological groups. Hemochromatosis patients demonstrated 17% more bodily pain than viral hepatitis patients and the strongest decrease in role emotional health with increasing age. Aetiological groups showed a worse generic HRQoL and more fatigue than controls. In conclusion, viral hepatitis and hemochromatosis patients have a more impaired HRQoL than patients of other liver disease aetiological groups.
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Abbreviations
- HRQoL:
-
Health Related Quality of Life
- LDSI:
-
Liver Disease Symptom Index
- MFI-20:
-
Multidimensional Fatigue Index-20
- NLV:
-
Nederlandse Leverpatiënten Vereniging (Dutch liver patient association)
- OR:
-
Odds ratio
- SF-36:
-
Short Form-36
References
CBS. Frequencies of death per primary cause of death and chronic diseases in 2000
Foster GR, Goldin RD, Thomas HC. (1998) Chronic hepatitis C virus infection causes a significant reduction in quality of life in the absence of cirrhosis. Hepatology 27: 209–12
Younossi ZM, Boparai N, Price LL, Kiwi ML, McCormick M, Guyatt G. (2001) Health-related quality of life in chronic liver disease: The impact of type and severity of disease. Am J Gastroenterol 96: 2199–205
Marchesini G, Bianchi G, Amodio P, et al. (2001) Factors associated with poor health-related quality of life of patients with cirrhosis. Gastroenterology 120: 170–78
Younossi ZM, Boparai N, McCormick M, Price LL, Guyatt G. (2001) Assessment of utilities and health-related quality of life in patients with chronic liver disease. Am J Gastroenterol 96: 579–3
Fayers PM, Machin D. (2000) Quality of Life, Assessment, Analysis and Interpretation. John Whiley & Sons, LTD, Chichester
Bayliss MS (1999) Methods in outcomes research in hepatology: Definitions and domains of quality of life. Hepatology 29: 3S-6S
Unal G, de Boer JB, Borsboom GJ, Brouwer JT, Essink-Bot M, de Man RA. (2001) A psychometric comparison of health-related quality of life measures in chronic liver disease. J Clin Epidemiol 54: 587–96
Obhrai J, Hall Y, Anand BS (2001) Assessment of fatigue and psychologic disturbances in patients with hepatitis C virus infection. J Clin Gastroenterol 32: 413–17
Aadahl M, Hansen BA, Kirkegaard P, Groenvold M. (2002) Fatigue and physical function after orthotopic liver transplantation. Liver Transpl 8: 251–59
Goldblatt J, Taylor PJ, Lipman T, et al. (2002) The true impact of fatigue in primary biliary cirrhosis: A population study. Gastroenterology 122: 1235–241
van der Plas SM, Hansen BE, de Boer JB, et al. (2004) The Liver Disease Symptom Index 2.0; validation of a disease-specific questionnaire. Qual Life Res 13: 1469–481
Aaronson NK, Muller M, Cohen PD, et al (1998) Translation, validation, and norming of the Dutch language version of the SF-36 Health Survey in community and chronic disease populations. J Clin Epidemiol 51: 1055–068
Ware JE, Snow KK, Kosinski M, Gandek B. (2004) SF-36 Health Survey Manual and Interpretation Guide. New England Medical Center, The health institute, Boston
Smets EMA, Garssen B, Bonke B. Het meten van vermoeidheid met de multidimensionele vermoeidheidsindex (MVI-20), een handleiding. University of Amsterdam, Department of Medical Psychology, 1995
Smets EM, Visser MR, Willems-Groot AF, Garssen B, Schuster-Uitterhoeve AL, de Haes JC (1998) Fatigue and radiotherapy: (B) experience in patients 9 months following treatment. Br J Cancer 78: 907–12
Watson D, Pennebaker JW. (1989) Health complaints, stress, and distress: Exploring the central role of negative affectivity. Psychol Rev 96: 234–54
Feldman M, Scharschmidt BF, Sleisenger M. (1998) Gastrointestinal and Liver Disease. WB Saunders Company, Philadelphia
van der Meer J, Stehouwer C. (2001) Interne Geneeskunde. Bohn Stafleu Van Loghum, Houten
Ganem D, Prince AM. (2004) Hepatitis B virus infection–natural history and clinical consequences. N Engl J Med 350: 1118–129
Braunwald E, Fauci AS. Harrison’s Principles of Internal Medicine Online. The McGraw-Hill Companies, 2002
Willis G, Scott DG, Jennings BA, Smith K, Bukhari M, Wimperis JZ. (2002) HFE mutations in an inflammatory arthritis population. Rheumatology (Oxford) 41: 176–79
Vaiopoulos G, Papanikolaou G, Politou M, Jibreel I, Sakellaropoulos N, Loukopoulos D. (2003) Arthropathy in juvenile hemochromatosis. Arthritis Rheum 48: 227–30
McDonnell SM, Preston BL, Jewell SA, et al. (1999) A survey of 2,851 patients with hemochromatosis: Symptoms and response to treatment. Am J Med 106: 619–24
Wang XS, Cleeland CS, Mendoza TR, et al. (1999) The effects of pain severity on health-related quality of life: A study of Chinese cancer patients. Cancer 86: 1848–855
Katz N. (2002) The impact of pain management on quality of life. J Pain Symptom Manage 24: S38–S47
Acknowledgements
Our study was supported by the Dutch foundation of Hepatogastroenterology (Maag Lever Darm Stichting), grant number WS 98–9.
We wish to thank the NLV for their organisational support and their input in the development of various items and moreover all the NLV members for their enthusiastic participation in our study. Without their help this study would not have been possible. Finally we thank E. Smets and M. Müller for providing respectively the MFI-20 and the SF-36 Dutch norm data.
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Appendix
Appendix
List used for registration of patient aetiology in the background questionnaire.
For each liver disease in the list below, the following four questions were asked:
-
1.
In which year was/were your liver disease(s) diagnosed by the medical specialist?
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2.
Was the duration of the liver disease longer than 6 months? (yes/no)
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3.
Are you using medication to suppress the liver disease? (yes/no)
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4.
Has the liver disease been cured? (yes/no)
Viral Hepatitis: Hepatitis A; Hepatitis B; Hepatitis C; Hepatitis D; Hepatitis E; Hepatitis G; Hepatitis CMV (Cytomegalo virus); Hepatitis EBV (Epstein-Barr virus); Parenchymal liver disease, non-viral: Autoimmune hepatitis; Alcoholic hepatitis; Drug induced hepatitis; Toxic hepatitis; Hepatitis due to an unknown cause; Steatosis (fatty degeneration of the liver); Granulomatous hepatitis; Sarcoidosis; Reye’s syndrom; Vascular disease: Budd-Chiari syndrome; Venous congestion; Veno-occlusive disease; Porta-thrombosis; Idiopatic (or primary) portal hypertension; Cardiac cirrhosis; Cholestatic liver diseases: Primary Biliary Cirrhosis (PBC);Primary Sclerosing Cholangitis (PSC); Secondary Biliary Cirrhosis; Congenital liver diseases, metabolic: Wilson’s disease (copper storage disease); Hemochromatosis; Alpha -1-antitrypsin-deficiency; Porphyria; Gilbert’s syndrome; Dubin-Johnson syndrome; Crigler-Najjer disease; Primary glyceric aciduria; Rotor’s syndrome; Galactosemia; Niemann-Pick disease; Gaucher’s disease; Congenital diseases, anatomical: Congenital liver cysts; Choledochus-cyst(s); Congenital liver fibrosis; Biliary atresia; Allagille’s syndrome; Arteriovenous malformation; Osler-Weber-Rendu disease; Caroli’s syndrome; Malignant malformations: Hepatocellular carcinoma; Cholangiocarcinoma; APUDoma; Carcinoid syndrome; Metastasis of the liver; Cholangiocellular carcinoma; Benign malformations: Hepatocellular adenoma; Hemangioma; Focal nodular hyperplasia; Nodular regenerative hyperplasia; Parasitic liver diseases: Amoeba abcess; Schistosomiasis; Echinococcus-cyst(s); Cholelithiasis: Cholecystolithiasis (Gallbladder stone disease); Choledocholithiasis (Bile duct stone disease); Intrahepatic gall stones; Other liver diseases: Hepatic encephalopathy; My liver disease has not been mentioned in the table. My liver disease(s) is/are:1....,2....,3.....
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van der Plas, S.M., Hansen, B.E., de Boer, J.B. et al. Generic and disease-specific health related quality of life of liver patients with various aetiologies: A survey. Qual Life Res 16, 375–388 (2007). https://doi.org/10.1007/s11136-006-9131-y
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DOI: https://doi.org/10.1007/s11136-006-9131-y