Almost two out of ten patients with primary biliary cholangitis (PBC) experience a high level of fatigue, which interferes with their daily activity and quality of life, especially affecting elderly women.
Also, almost a quarter of them (24%) experience moderate fatigue, as revealed by preliminary data from an observational study on the perception of fatigue in PBC patients. These figures show that “the perception of fatigue in patients with PBC is lower in Spain than in other countries”, as pointed out by Dr. Albert ParésSenior Hepatology Consultant at Hospital Clínic de Barcelona and coordinator of this study.
The study, which has been presented on the occasion of World PBC Day, which is commemorated this Sunday, September 13, has had the participation of 88 patients with PBC in Spain, of which 87% are women, aged average of 64 years. “Both data agree perfectly with the reality that we see in the queries, since the majority of patients with PBC are women and we are increasingly diagnosing this disease in older patients”, highlights Dr. Parés, who also points out that the data obtained in this study are very similar to those obtained in previous investigations. “The average fatigue score we had was 23 and now we have obtained 21.8”, points out this expert.
Almost two in ten patients with primary biliary cholangitis (PBC) experience a high level of fatigue, and almost a quarter of them moderate fatigue
These figures, according to other investigations led by Dr. Parés’ team, are very similar to those obtained in Milan (Italy) or Tokyo (Japan), but much lower than those obtained in places like Newcastle (United Kingdom). “Although these are only hypotheses, we suspect that the geographic latitudes from Italy, Japan or Spain, which are more similar and close to the equator, could be the cause of these similar figures and also the explanation of the higher figures from the United Kingdom, which offers a ‘score’ close to 30”, says Dr. Parés. Another hypothesis that the doctor points out is the cultural aspects, which could also significantly influence the perception of individuals about fatigue. Where the majority of patients do coincide, regardless of their place of origin, is in the pruritusa symptom that most patients perceive with the same intensity.
As for itself fatigue may or may not be correlated with any comorbidity (diabetes, depression, anemia…) or with age of the patients with PBC, Dr. Parés points out that, according to the sample analyzed, it does not seem that any of these aspects is an indicator of a greater or lesser degree of fatigue, although he points out that more studies would be necessary to confirm this with rotundity. And the same goes for the progression of the disease. “Although it does seem that patients with further disease progression may have more fatiguewe cannot really affirm it with the data we have today”explains this professional.
Albi-Spain joins CBP World Day
One of the non-pharmacological prescriptions that specialists give to patients with PBC is the practice of physical exercise. For this reason, on the occasion of World CBP Day, the , located in the United Kingdom, encourages all PBC patients and their families to take part in the Kiltwalk, a race that is organized every year in Edinburgh to raise funds for different initiatives. This year, the race will be held virtually and the CBP Foundation has created a solidarity challenge within this event that is aimed at raising funds for this disease and that anyone can join .
From Spain, the Association for the Fight against Inflammatory Biliary Diseases () joins this initiative and its president, Elena Arcegaencourages all people diagnosed with CBP in Spain to go out take a walk on Sunday with your family and friends and upload images of the tour to their social networks mentioning @Kiltwalk under the hashtag #PBCday2020. “As it is an ‘online’ race, any PBC patient in the world can join, even if they do not make any financial donation to the cause, which means that this year we can be closer than everdespite the circumstances”, says the president of Albi-Spain.
In addition, the CBP Foundation also organizes a series of webinars on the disease that are free to access throughout the day and in different parts of the world that can be accessed through this . “Being in different languages and located in such different geographical areas, access to information about the disease multiplies not only from patients, but also from society in general, which gives us great visibility”, explains Arcega, who believes that this initiative is a great idea to connect patients with primary biliary cholangitis from all over the world.
In addition, from Albi-Spain they are also preparing a series of webinars on CBP in Spanish which are expected to take place between the months of October and December. “The idea is that the first webinar will be attended by a specialist in nutrition who can give us clues about which foods are the best to preserve the health of our liver and, for the second, we are thinking of a specialist in hepatology who can tell us about the latest advances in primary biliary cholangitis”, says the president of Albi-Spain. For the third webinars it is expected to have a specialist in Rheumatologysince these professionals often treat autoimmune diseases whose symptoms can sometimes overlap with those of PBC.