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

Yan Sheng Liu , Gui Jia , Da Wei Ding , Lin Hua Zheng , Rui Qing Sun , Xiu Fang Wang , Juan Deng , Chun Mei Yang , Li Na Cui , Chang Cun Guo , Yu Long Shang , Ying Han

Journal of Digestive Diseases ›› 2024, Vol. 25 ›› Issue (1) : 61 -69.

PDF
Journal of Digestive Diseases ›› 2024, Vol. 25 ›› Issue (1) : 61 -69. DOI: 10.1111/1751-2980.13254
ORIGINAL ARTICLE

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

Author information +
History +
PDF

Abstract

Objectives: Primary 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.

Methods: An online survey regarding the general knowledge, diagnosis, and management of PBC was completed by physicians and patients.

Results: A 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.

Conclusions: Physicians must improve their awareness of PBC. Patient education and patient–physician communication are important for improving the patient's QoL.

Keywords

awareness / perception / primary biliary cholangitis / quality of life

Cite this article

Download citation ▾
Yan Sheng Liu, Gui Jia, Da Wei Ding, Lin Hua Zheng, Rui Qing Sun, Xiu Fang Wang, Juan Deng, Chun Mei Yang, Li Na Cui, Chang Cun Guo, Yu Long Shang, Ying Han. Differences in the perceptions of patients with primary biliary cholangitis and physicians from various hospital departments: An online survey. Journal of Digestive Diseases, 2024, 25(1): 61-69 DOI:10.1111/1751-2980.13254

登录浏览全文

4963

注册一个新账户 忘记密码

References

[1]

Liu YS, Tian SY, Jia G, et al. Symptoms burden and health-related quality of life in Chinese patients with primary biliary cholangitis. J Clin Transl Hepatol. 2021;9(6):860-867.

[2]

Hegade VS, Mells GF, Fisher H, et al; UK-PBC Consortium. Pruritus is common and undertreated in patients with primary biliary cholangitis in the United Kingdom. Clin Gastroenterol Hepatol. 2019;17(7):1379–1387.e3.

[3]

Yagi M, Tanaka A, Abe M, et al. Symptoms and health-related quality of life in Japanese patients with primary biliary cholangitis. Sci Rep. 2018;8(1):12542.

[4]

Rice S, Albani V, Minos D, et al. Effects of primary biliary cholangitis on quality of life and health care costs in the United Kingdom. Clin Gastroenterol Hepatol. 2021;19(4):768–776.e10.

[5]

Zeng N, Duan WJ, Chen S, et al. Epidemiology and clinical course of primary biliary cholangitis in the Asia–Pacific region: a systematic review and meta-analysis. Hepatol Int. 2019;13(6):788-799.

[6]

Corpechot C, Abenavoli L, Rabahi N, et al. Biochemical response to ursodeoxycholic acid and long-term prognosis in primary biliary cirrhosis. Hepatology. 2008;48(3):871-877.

[7]

Parés A, Caballería L, Rodés J. Excellent long-term survival in patients with primary biliary cirrhosis and biochemical response to ursodeoxycholic acid. Gastroenterology. 2006;130(3):715-720.

[8]

Hirschfield GM, Dyson JK, Alexander GJM, et al. The British Society of Gastroenterology/UK-PBC primary biliary cholangitis treatment and management guidelines. Gut. 2018;67(9):1568-1594.

[9]

Jopson L, Khanna A, Peterson P, Rudell E, Corrigan M, Jones D. Are clinicians ready for safe use of stratified therapy in primary biliary cholangitis (PBC)? A study of educational awareness. Dig Dis Sci. 2018;63(10):2547-2554.

[10]

Matsuzawa Y, Azuma K, Sawa T, et al. A survey of clinical physician's perceptions of stigma and advocacy in patients with type 2 diabetes in Kanagawa, Japan. J Diabetes Investig. 2022;13(12):2073-2080.

[11]

Kozhakhmetova A, Aidossov S, Kapassova A, Borsoldayeva K. Current knowledge and “myths” about celiac disease among physicians in the Republic of Kazakhstan: a countrywide cross-sectional study. Front Public Health.2022;10:956135.

[12]

Leighton J, Thain C, Mitchell-Thain R, Dyson JK, Jones DE. Patient ownership of primary biliary cholangitis long-term management. Frontline Gastroenterol. 2021;12(5):370-373.

[13]

Floreani A, Scaffidi M, Coco B, et al; Italian Foundation for Research in Hepatology (FIRE). Primary biliary cholangitis: perception and expectation of illness. Dig Liver Dis. 2022;54(9):1230–1233.

[14]

Schreiber S, Parés J, Louis E, Holley D, Buch M, Paridaens K. Perception gaps between patients with ulcerative colitis and healthcare professionals: an online survey. BMC Gastroenterol. 2012;12:108.

[15]

Rubin DT, Sninsky C, Siegmund B, et al. International perspectives on management of inflammatory bowel disease: opinion differences and similarities between patients and physicians from the IBD GAPPS Survey. Inflamm Bowel Dis. 2021;27(12):1942-1953.

[16]

Kaplan A, Comisar L, Ufere NN, et al. Understanding prognosis: discrepancy in prognosis estimates between patients with cirrhosis and their hepatologists. Clin Gastroenterol Hepatol. 2023;21(4):1005-1012.e4.

[17]

Cossais S, Schwarzinger M, Pol S, et al. Quality of life in patients with chronic hepatitis C infection: severe comorbidities and disease perception matter more than liver-disease stage. PLoS One. 2019;14(5):e0215596.

[18]

Jacoby A, Rannard A, Buck D, et al. Development, validation, and evaluation of the PBC-40, a disease specific health related quality of life measure for primary biliary cirrhosis. Gut. 2005;54(11):1622-1629.

[19]

Pan ZH, Yang T, Chi CH, et al. An online survey of primary care physicians' knowledge of common respiratory diseases in China. NPJ Prim Care Respir Med. 2022;32(1):28.

[20]

Assiri AM, Saeed A, Saeed E, et al. Assessment of knowledge of celiac disease among health care professionals. Saudi Med J. 2015;36(6):751-753.

[21]

Low JTS, Rohde G, Pittordou K, et al. Supportive and palliative care in people with cirrhosis: international systematic review of the perspective of patients, family members and health professionals. J Hepatol. 2018;69(6):1260-1273.

[22]

Henson JB, Helzberg JH, Muir AJ. Patient-predicted outcomes are associated with quality of life in patients with primary sclerosing cholangitis. Dig Dis Sci. 2022;67(12):5483-5492.

[23]

Ng CH, Lim WH, Chin YH, et al. Living in the non-alcoholic fatty liver disease silent epidemic: a qualitative systematic review of patients' perspectives. Aliment Pharmacol Ther. 2022;56(4):570-579.

[24]

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.

[25]

Glass O, Liu D, Bechard E, et al. Perceptions of exercise and its challenges in patients with nonalcoholic fatty liver disease: a survey-based study. Hepatol Commun. 2022;6(2):334-344.

RIGHTS & PERMISSIONS

2024 The Authors. Journal of Digestive Diseases published by Chinese Medical Association Shanghai Branch, Chinese Society of Gastroenterology, Renji Hospital Affiliated to Shanghai Jiaotong University School of Medicine and John Wiley & Sons Australia, Ltd.

AI Summary AI Mindmap
PDF

266

Accesses

0

Citation

Detail

Sections
Recommended

AI思维导图

/