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Generic and disease-specific health related quality of life of liver patients with various aetiologies: A survey

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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

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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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Authors and Affiliations

  1. Department of Gastroenterology and Hepatology, Erasmus Medical Centre Rotterdam, P.O. Box 2040, 3000 CA, Rotterdam, The Netherlands

    Simone M. van der Plas, Bettina E. Hansen, Rob A. de Man & Solko W. Schalm

  2. Department of Epidemiology and Biostatistics, Erasmus Medical Centre Rotterdam, Rotterdam, The Netherlands

    Bettina E. Hansen & Theo Stijnen

  3. Department of Medical Psychology and; Psychotherapy, Erasmus Medical Centre Rotterdam, Rotterdam, The Netherlands

    Josien B. de Boer & Jan Passchier

Authors
  1. Simone M. van der Plas
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  2. Bettina E. Hansen
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  3. Josien B. de Boer
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  4. Theo Stijnen
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  5. Jan Passchier
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  6. Rob A. de Man
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  7. Solko W. Schalm
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Corresponding author

Correspondence to Bettina E. Hansen.

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. 1.

    In which year was/were your liver disease(s) diagnosed by the medical specialist?

  2. 2.

    Was the duration of the liver disease longer than 6 months? (yes/no)

  3. 3.

    Are you using medication to suppress the liver disease? (yes/no)

  4. 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

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