Online ISSN: 3007-0244,
Print ISSN:  2410-4280
QUALITY OF LIFE IN PRIMARY BILIARY CHOLANGITIS AND ITS ASSESSMENT
Introduction. Primary biliary cholangitis is an autoimmune liver disease that leads to early disability and mortality of patients. Clinical manifestations, such as asthenia, itching, memory and sleep disorders, depression and vegetative dysfunction significantly worsen the quality of life of patients and are not eliminated by treating the underlying process. Assessing impact of these symptoms on the quality of life is challenging due to their subjective and multifaceted nature; therefore, a wide variety of questionnaires and scales have been developed to enable such evaluation. Selecting the most appropriate tool is a complex and very important task for both researchers and clinicians. The aim of this work is to review various methods to assess the quality of life in patients with primary biliary cholangitis, and to describe the most commonly used questionnaires and scales. Search strategy included studies and publications from international databases and resources such as Scopus, Web of Science Core Collection, PubMed, MedLine, etc. From the initial 178 publications, 51 scientific papers were selected, most of which were published in the last 5-10 years. Results and conclusions. This work classifies the currently available methods of assessment of quality of life in primary biliary cholangitis, which will allow clinicians to navigate through the wide variety of questionnaires and scales and choose the most appropriate tool for each disease scenario.
Аssel Bulgunova1, https://orcid.org/0009-0007-8171-9947 Кairat Adaibayev1, https://orcid.org/0000-0001-7881-3931 Dana Saipiyeva1, https://orcid.org/0000-0003-4270-2679 Turlybek Tuganbekov1, https://orcid.org/0000-0002-5936-1674 Manarbek Askarov2, https://orcid.org/0000-0003-4881-724X Ardak Omarbekov1, https://orcid.org/0000-0003-2334-209X 1 NJSC “Astana Medical University”, Astana, the Republic of Kazakhstan; 2 JSC «National Scientific Medical Center», Astana, the Republic of Kazakhstan.
1. Adam Reich, Szepietowski Ja.C. Pruritus intensity assessment: challenge for clinicians // Expert Review of Dermatology. 2013. т. 8, №3, pp. 291-299. 2. Al-Harthy N., Kumagi T., Coltescu C., Hirschfield G.M. The specificity of fatigue in primary biliary cirrhosis: evaluation of a large clinic practice // Hepatology, 2015 т. 52, № 2, p. 562–570. 3. Alrubaiy L., Mells G., Flack S., Bosomworth H., Hutchings H., Williams J., Jones D. UK-PBC Research Consortium, «PBC-10: a short quality of life measure for clinical screening in primary biliary cholangitis // Aliment Pharmacol Ther, 2019. т.50 Dec, №11-12, pp.1223-1231. 4. Ameringer S., Elswick R.K., Menzies V., Robins J.L., Starkweather A., Walter J., Gentry A.E., Jallo N. Psychometric Evaluation of the Patient-Reported Outcomes Measurement Information System Fatigue-Short Form Across Diverse Populations // Nurs Res. 2016. Jul. т. 65, №4, pp. 279-89. 5. Аn den Berg-Emons R., van Ginneken B., Wijffels M., Tilanus H., Metselaar H., Stam H., Kazemier G. Fatigue is a major problem after liver transplantation // Liver Transpl, 2006. Т. 12, № 6. Jun, pp. 928-33. 6. Angulo P., Dickson E.R., Therneau T.M. Comparison of three doses of ursodeoxycholic acid in the treatment of primary biliary cirrhosis: a randomized trial // J Hepatol, 1999. т. 30, p. 830–835. 7. Bergasa N.V., Mehlman J.K., Jones E.A. Pruritus and fatigue in primary biliary cirrhosis. Bailliere’s best practice & research. // Clin Gastroenterol, 2000. Т.14, № 4, p. 643–55. 8. Burke L.B., Kennedy D.L., Miskala P.H. et al. The use of patient-reported outcome measures in the evaluation of medical products for regulatory approval // Clin Pharmacol Ther, 2008. Т. 84, Aug № 2, p. 281–3. 9. Cifrek M, Medved V, Tonković S, Ostojić S. Surface EMG based muscle fatigue evaluation in biomechanic. Clin Biomech (Bristol, Avon), 2009. т. 24, p. 327–340. 10. de Veer R.C., da Silva G., van Hooff M.C. et al, Measurement properties of the PBC-40 and PBC-27: a Dutch validation study // BMJ Open Gastro. 2021., т. 8. 245-249. 11. Dobryakova E., DeLuca J., Genova H.M. et al., Neural correlates of cognitive fatigue: cortico-striatal circuitry and effort-reward imbalance // J Int Neuropsychol Soc, 2013. Т. 19,. pp. 849-53. 12. Doward L.C., Gnanasakthy A., Baker M.G. Patient reported outcomes: looking beyond the label claim // Health Qual Life Outcomes, 2014. Т. 8, № 89. рр. 415-422. 13. Elman S. et al. The 5-D itch scale: a new measure of pruritus // British J Dermatol. 2010. Т.162. p. 587–593. 14. Eschler D.C., Klein P.A. An evidence-based review of the efficacy of topical antihistamines in the relief of pruritus // J Drugs Dermatol., 2010. Т. 9, pр. 992–997. 15. Dull M.M., Wolf K., Vetter M. et al. Endogenous opioid levels do not correlate with itch intensity and therapeutic interventions in hepatic pruritus // Front Med (Lausanne), 2021. Т.14. №.8. doi: 10.3389/fmed.2021.641163. https://pubmed.ncbi.nlm.nih.gov/33937284/ (дата обращения 15.10.2023) 16. Finke C., Schlichting J., Papazoglou S. et al. Altered basal ganglia functional connectivity in multiple sclerosis patients with fatigue // Mult Scler, 2015. Т. 21, pp. 925-34. 17. Finsterer J. Biomarkers of peripheral muscle fatigue during exercise // BMC Musculoskelet Disord, 2012. Т.13, №218.p.1-13 doi: 10.1186/1471-2474-13-218. PMID: 23136874; PMCID: PMC3534479 (дата обращения 10.12.2023) 18. Fisk J.D., Ritvo P.G., Ross L., Haase D.A., Marrie T.J., Schlech W.F. Measuring the functional impact of fatigue: initial validation of the fatigue impact scale // Clin Infect Dis. 1994. Suppl 1, Т.18, pp. S79-83. 19. Floreani A, Gabbia D, De Martin S. Update on the Pharmacological Treatment of Primary Biliary Cholangitis // Biomedicines. 2022, Aug 20. 10(8):2033-2020. 20. Forton DM, Patel N, Prince M, et al. Fatigue and primary biliary cirrhosis: association of globus pallidus magnetisation transfer ratio measurements with fatigue severity and blood manganese levels // Gut, 2004. Т. 53, pp. 587-92. 21. Gandevia S.C. Spinal and supraspinal factors in human muscle fatigue // Physiol Rev, 2001. Т. 81, рр. 1725–1789. 22. Ge L., Liu S., Li S., Yang J., Hu G., Xu C., Song W. Psychological stress in inflammatory bowel disease: Psychoneuroimmunological insights into bidirectional gut-brain communications // Front Immunol., 2022 Oct 6;13:1016578. doi: 10.3389/fimmu.2022.1016578. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9583867/ (дата обращения 10.12.2023) 23. Goldblatt J.S., Taylor P.J., Lipman T., Prince M.,* Baragiotta A., Bassendine M.F., James O.F.W., Jones D.E.J. The True Impact of Fatigue in Primary Biliary Cirrhosis: A Population Study // Gastroenterology, 2002. Т. 122. p. 1235–1241. 24. Grover V.P., Southern L., Dyson J.K. et al. Early primary biliary cholangitis is characterised by brain abnormalities on cerebral magnetic resonance imaging // Aliment Pharmacol Ther., 2016. Т. 44, pp. 936-45. 25. Hohenester S., Oude-Elferink R.P., Beuers U. Primary biliary cirrhosis. 2009. 31 Sep. Т.3, pp. 283-307. 26. Huet P.M., Deslauriers J., Tran A. et al. Impact of fatigue on the quality of life of patients with primary biliary cirrhosis // Am J Gastroenterol., 2000. Т. 95, №3, pp. 760-767. 27. Jacoby A., Rannard A., Buck D., Bhala N., Newton J.L., James O.F., Jones D.E. Development, validation, and evaluation of the PBC-40, a disease specific health related quality of life measure for primary biliary cirrhosis // Gut. 2005. Nov, Т. 54, № 11, pp. 1622-9. 28. Kośnik A., Wójcicki M. Fatigue in chronic liver disease patients: prevalence, pathophysiology, and management. Gastroenterology, 2022. Т.17, №1, pp.21-27. 29. Krawczyk M., Koźma M., Szymańska A., Leszko K., Przedniczek M., Mucha K, Foroncewicz B et al. Effects of liver transplantation on health-related quality of life in patients with primary biliary cholangitis // Clin Transplant. 2018 Dec;32(12):e13434. doi: 10.1111/ctr.13434. Epub 2018 Dec 6. https://pubmed.ncbi.nlm.nih.gov/30362634/ (дата обращения 11.01.2024) 30. Lee J.Y., Danford C.J., Trivedi H.D. et al. Treatment of fatigue in primary biliary cholangitis: a systematic review and meta-analysis // Dig Dis Sci, 2019. Т. 64, pp. 2338-50. 31. Lynch E.N., Campani C., Innocenti T., Dragoni G., Biagini M.R., Forte P., Galli A. Understanding fatigue in primary biliary cholangitis: From pathophysiology to treatment perspectives // World J Hepatol., 2022. 27 Jun. Т.14, № 6, pp. 1111-1119. 32. Machado M.O., Kang N.C., Tai F., Sambhi R.D.S., Berk M., Carvalho A.F., Chada L.P., Merola J.F., Piguet V., Alavi A. Measuring fatigue: a meta-review // Int J Dermatol, 2021. Т. 60, p. 1053–1069. 33. Mayo M.J., Carey E., Smith H.T. et al. Impact of Pruritus on Quality of Life and Current Treatment Patterns in Patients with Primary Biliary Cholangitis // Dig Dis Sci, 2023. Т. 68, p. 4064–4065. 34. McDonald C., Newton J., Lai H.M., Baker S.N., Jones D.E. Central nervous system dysfunction in primary biliary cirrhosis and its relationship to symptoms // J Hepatol, Т. 2010. Dec 53, № 6, pp. 1095-100. 35. Milovanovic T., Popovic D., Stojkovic M.L., Dumic I., Dragasevic S., Milosavljević N. Quality of Life in Patients with Primary Biliary Cholangitis: A Single-Center Experience in Serbia // Dig Dis, 2020. Т.38, №6, p. 515–521. 36. Montali L., Gragnano A., Miglioretti M., Frigerio A., Vecchio L., Gerussi A., Cristoferi L. et al. Quality of life in patients with primary biliary cholangitis: A cross-geographical comparison // J Transl Auto, 2021. Т. 4, p. 100081. 37. Montali L., Tanaka A., Riva P., Takahashi H., Cocchi C., Ueno Y., Miglioretti M. et al. Italian-Japanese PBC Study Group, A short version of a HRQoL questionnaire for Italian and Japanese patients with Primary Biliary Cirrhosis // Dig Liver Dis, Т. 42, № 10, pp. 718-23. 38. Mosher V.A.L., Swain M.G., Pang J.X.Q. Primary Biliary Cholangitis Alters Functional Connections of the Brain's Deep Gray Matter. 2017;8:e107 // Clin Transl Gastroenterol. 2017, 27 Jul. т. 8, № 7, p.107. 39. Neuberger J., Jones E.A. Liver transplantation for intractable pruritus is contraindicated before an adequate trial of opiate antagonist therapy // Eur J Gastroenterol Hepatol. 2001.13(11):1393–4, Т. 13, №11, p. 1393–4. 40. Newton J., Davidson A., Kerr S., Bhala N., Pairman J., Burt J., Jones D. Autonomic dysfunction in primary biliary cirrhosis correlates with fatigue severity // European Journal of Gastroenterology и Hepatology, 2007. Т.19, Mar №2, pp. 125-32. 41. Phaw N.A., Dyson J.K., Mells G., Jones D. Understanding Fatigue in Primary Biliary Cholangitis // Dig Dis Sci. 2021. 66(7), Т. 66, № 7, pр. 2380–2386. 42. Sivakumar T., Kowdley K.V. Anxiety and Depression in Patients with Primary Biliary Cholangitis: Current Insights and Impact on Quality of Life // Hepat Med, 2021. Т. 13, pp. 83-92. 43. Prince M.I., James O.F., Holland N.P., Jones D.E. , «Validation of a fatigue impact score in primary biliary cirrhosis: towards a standard for clinical and trial use // J Hepatol. 2000. Т. Mar. 32, № 3, pp. 368-73. 44. Rozand V., Grosprêtre S., Stapley P.J., Lepers R. Assessment of Neuromuscular Function Using // Percutaneous Electrical Nerve Stimulation // J Vis Exp. 2015 Sep 13:(103):52974.doi: 10.3791/52974 https://pubmed.ncbi.nlm.nih.gov/26436986/ (дата обращения 11.01.2024) 45. Sivakumar T, Kowdley K.V. Anxiety and Depression in Patients with Primary Biliary Cholangitis: Current Insights and Impact on Quality of Life // Hepat Med, 2021. 28 Aug. Т. 13, pp. 83-92. 46. van Os E., van den Broek W.W., Mulder P.G. et al. Depression in patients with primary biliary cirrhosis and primary sclerosing cholangitis // J Hepatol., 2007. Т. 46, pp. 1099-103. 47. Weldring T., Smith S.M. Patient-Reported Outcomes (PROs) and Patient-Reported Outcome Measures (PROMs) // Health Serv Insights, 2013. Т.6, 4 Aug., pp. 61-68. 48. Wu Q., Chen Y., Zhou Y., Zhang X., Huang Y., Liu R. Reliability, validity, and sensitivity of short-form 36 health survey (SF-36) in patients with sick sinus syndrome // Medicine (Baltimore 2023 Jun 16;102(24):e33979. doi: 10.1097/MD.0000000000033979. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10270486/ (дата обращения 11.01.2024) 49. Xin A., Xian Ya., Hai-yan F., Jia-min X., Ying-mei T. Health-related quality of life questionnaires used in primary biliary cholangitis: a systematic review // Scandinavian Journal of Gastroenterology, 2022. Т. 57, №3, pp. 333-339. 50. Yansheng L., Siyuan T., Gui J. Symptoms Burden and Health-related Quality of Life in Chinese Patients with Primary Biliary Cholangitis // Journal of Clinical and Translational Hepatology, 2021. Т. 9, № 6, p. 860–867. 51. Montali L., Gragnano A., Miglioretti M., Frigerio A., Vecchio L., Gerussi A., Cristoferi L. et al. Quality of life in patients with primary biliary cholangitis: A cross-geographical comparison // J Transl Auto, 2021. Т. 4, p. 100081.
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Bulgunova A., Adaibaev K., Saipiyeva D., Tuganbekov T., Askarov M., Omarbekov A..Quality of life in primary biliary cholangitis and its assessment // Nauka i Zdravookhranenie [Science & Healthcare]. 2024, (Vol.26) 1, pp. 191-200. doi 10.34689/SH.2024.26.1.023

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