Total and individual PBC-40 scores are reliable for the assessment of health-related quality of life in Greek patients with primary biliary cholangitis

Eirini I Rigopoulou; Marianna Bakarozi; Ioannis Dimas; Konstantinos Galanis; Vasiliki Lygoura; Nikolaos K Gatselis; Mairi Koulentaki; George N Dalekos

doi:10.2478/jtim-2023-0098

Total and individual PBC-40 scores are reliable for the assessment of health-related quality of life in Greek patients with primary biliary cholangitis

J Transl Int Med. 2023 Sep 2;11(3):246-254. doi: 10.2478/jtim-2023-0098. eCollection 2023 Sep.

Authors

Eirini I Rigopoulou^{1

2}, Marianna Bakarozi¹, Ioannis Dimas³, Konstantinos Galanis^{1

2}, Vasiliki Lygoura^{1

2}, Nikolaos K Gatselis^{1

2}, Mairi Koulentaki³, George N Dalekos^{1

2}

Affiliations

¹ Department of Medicine and Research Laboratory of Internal Medicine, National Expertise Center of Greece in Autoimmune Liver Diseases, General University Hospital of Larissa, Larissa 41110, Greece.
² European Reference Network on Hepatological Diseases (ERN RARE-LIVER), General University Hospital of Larissa, Larissa 41110, Greece.
³ Hepatology Outpatient Clinic, Gastroenterology Department, University Hospital Heraklion, Heraklion, Crete 70013, Greece.

Abstract

Background: Primary biliary cholangitis (PBC) has been long associated with impairment of various aspects of health-related quality of life (HRQoL) with substantial differences among populations. This study evaluated for the first-time the HRQoL in Greek PBC patients in conjunction with clinical and laboratory parameters of patients.

Methods: We analyzed prospectively collected data regarding the HRQoL by using the PBC-40 and SF-36 questionnaires in 374 Greek PBC patients and 131 age- and sex-matched non-PBC controls.

Results: The PBC-40 questionnaire is a reliable tool for HRQoL assessment in Greek PBC patients (Cronbach's α > 0.7 for all domains). Implementation of PBC-40 and SF-36 demonstrated significant impairment of HRQoL in Greek PBC patients compared to controls (P < 0.001 for all comparisons). Emotional dysfunction, social impairment, and fatigue (100%, 80.5% and 78%, respectively) were amongst those with the highest, while cognitive dysfunction (32%) with the least impact on quality of life. Fatigue was associated with female sex (P = 0.02), longer disease duration (P = 0.01), presence of cirrhosis (P = 0.02) and positivity for PBC-specific ANA (P < 0.05), while social dysfunction with increased age (P < 0.001), longer disease duration (P < 0.001) and presence of cirrhosis (P = 0.004). Living in urban areas was linked to impaired social function (P = 0.04), cognition (P = 0.02), fatigue (P = 0.04) and increased total PBC-40 score (P = 0.01).

Conclusions: Implementation of PBC-40 and SF-36 revealed impaired HRQoL in Greek PBC patients with fatigue, social and emotional dysfunction exerting the highest impact. However, total, and individual PBC-40 scores were lower than that reported in studies from Northern/Central Europe and Canada. Deranged HRQoL was associated with severity of liver disease and presence of PBC-specific ANA.

Keywords: PBC-40; Primary biliary cholangitis; quality of life.

© 2023 Eirini I. Rigopoulou, Marianna Bakarozi, Ioannis Dimas, Konstantinos Galanis, Vasiliki Lygoura, Nikolaos K. Gatselis, Mairi Koulentaki, George N. Dalekos, published by De Gruyter on behalf of Scholar Media Publishing.

Grants and funding

This research did not receive any specific grant from funding agencies in the public, commercial, or not-for-profit sectors.