What impact do the symptoms of primary biliary cholangitis have on the patient and their quality of life
Primary biliary cholangitis (PBC) is a serious chronic cholestatic autoimmune liver disease that predominantly affects middle-aged women and can lead to end-stage liver failure and the need for transplantation. Several studies published this year show a reduction in the quality of life of patients with this disease due to its accompanying symptoms.
Serbian study
Milovanović et al. included 127 patients with PBC treated at a single center in Serbia in their study. To evaluate various aspects of quality of life, the authors used a specific validated questionnaire called PBC-40. Based on the responses, after at least 6 months of treatment, patients reported fatigue (76.45%) and pruritus (29.3%) as the most common moderate to severe symptoms. The majority of patients also described a moderate to severe impact of PBC in social (77.2%) and emotional (70.9%) domains.
German study
A recently published prospective study involving 140 patients with PBC was conducted by Kaps et al. After 1 year of treatment, 75% of patients achieved a biochemical response (according to the Paris II criteria) and this proportion remained stable during follow-up with a median duration of 5 years. Scores from the PBC-40 questionnaire indicated that fatigue (2.4 out of 5 points) and the emotional impact (2.3 out of 5 points) were the major burdens caused by the disease. The pruritus score was 1.1 out of 5 points.
International survey
A study presented at the online European Association for the Study of the Liver (EASL) congress this year was based on a survey conducted among 68 gastroenterologists and hepatologists in the USA, Germany, China, and Japan. Each physician completed a questionnaire for 3 patients with PBC and pruritus.
Mild pruritus was reported in 48%, moderate in 46%, and severe in 6% of cases. More than two-thirds of patients had chronic pruritus, while 31% had intermittent pruritus. About half of the patients with moderate to severe pruritus had to make some changes related to their job due to this symptom. The next most common symptom was fatigue, reported by 70% of patients. Patients with moderate to severe pruritus also more frequently reported emotional stress, jaundice, sleep problems, and dry eyes.
Summary and conclusion
The results of all 3 cited studies confirm the necessity of regular monitoring and evaluation of disease progression and the effectiveness of first-line treatment (according to EASL recommendations, at least once a year), as well as the impact of PBC on social and emotional quality of life for patients.
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Sources:
1. Milovanović T., Popović D., Stojković Lalosević M. et al. Quality of life in patients with primary biliary cholangitis: a single center experience in Serbia. Dig Dis 2020 Mar 6, doi: 10.1159/000506980 [Epub ahead of print].
2. Kaps L., Grambihler A., Yemane B. et al. Symptom burden and treatment response in patients with primary biliary cholangitis (PBC). Dig Dis Sci 2020 Oct; 65 (10): 3006–3013, doi: 10.1007/s10620-019-06009-3.
3. Smith H., Thompson A., Dussol F. et al. An international perspective on cholestatic pruritus in primary biliary cholangitis (PBC). Poster FRI-148. Digital International Liver Congress, European Association for the Study of the Liver (EASL), 2020 Aug 28.
4. European Association for the Study of the Liver. EASL Clinical Practice Guidelines: The diagnosis and management of patients with primary biliary cholangitis. J Hepatol 2017; 67 (1): 145–172.
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