Primary biliary cholangitis: perception and expectation of illness

Floreani, Annarosa; Scaffidi, Michela; Coco, B.; Giannini, Edoardo G.; Labanca, Sara; Bonaiuto, Emanuela; Martin, Sara De; Invernizzi, Pietro; Carbone, Marco; Alvaro, Domenico; Bragazzi, Maria Consiglia; Calvaruso, V.; Cossiga, Valentina; Cazzagon, Nora

doi:10.1016/j.dld.2022.02.006

Cited by 1 publication

(4 citation statements)

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“…At the time of diagnosis, patients may have serious difficulties in accepting their illness and may be worried about their future. 13 Negative emotions, along with numerous symptoms, can significantly impact their QoL. [1][2][3][4] In this study, we found that the awareness of PBC had the greatest impact on emotion scores.…”

Section: Discussionmentioning

confidence: 60%

“…Patients with PBC must fight the disease throughout their lifetime. At the time of diagnosis, patients may have serious difficulties in accepting their illness and may be worried about their future 13 . Negative emotions, along with numerous symptoms, can significantly impact their QoL 1–4 .…”

Section: Discussionmentioning

confidence: 99%

“…However, only a minority of patients discuss their ALP value, which is the most important biochemical indicator of PBC, with their physicians 12 . Moreover, a few patients request an improved relationships with their doctors 13 . The lack of communication between doctors and patients inevitably leads to a different understanding of the disease and its management.…”

Section: Introductionmentioning

confidence: 99%

“…12 Moreover, a few patients request an improved relationships with their doctors. 13 The lack of communication between doctors and patients inevitably leads to a different understanding of the disease and its management. Previous studies have reported a perception gap between patients and physicians regarding cirrhosis and inflammatory bowel disease.…”

mentioning

confidence: 99%

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Differences in the perceptions of patients with primary biliary cholangitis and physicians from various hospital departments: An online survey

Liu,

Jia,

Ding

et al. 2024

J of Digest Diseases

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ObjectivesPrimary biliary cholangitis (PBC) is a chronic autoimmune liver disease that affects the quality of life (QoL) of patients. This study aimed to evaluate the differences in perceptions of PBC among physicians from different hospital departments and patients with PBC.MethodsAn online survey regarding the general knowledge, diagnosis, and management of PBC was completed by physicians and patients.ResultsA total of 239 patients with PBC and 239 physicians from eight hospital departments (gastroenterology, infectious diseases, rheumatology, hepatobiliary surgery, pathology, clinical laboratory, ultrasound, and radiology) completed the survey. The results showed that physicians from departments other than gastroenterologists and rheumatologists lacked knowledge of PBC, and that junior gastroenterologists were uncertain about the diagnostic and treatment pathways of PBC. Importantly, the lack of knowledge significantly impacted the QoL of patients, especially the emotional scores of PBC‐40 (odds ratio −2.556, 95% confidence interval −3.852 to −1.260, P < 0.001). In addition, there was a perceived knowledge gap between patients and gastroenterologists.ConclusionsPhysicians must improve their awareness of PBC. Patient education and patient–physician communication are important for improving the patient's QoL.

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