Assessing and managing symptom burden and quality of life in primary sclerosing cholangitis patients

2021 ◽  
Author(s):  
Josiah D. McCain ◽  
David M. Chascsa ◽  
Keith D. Lindor
Keyword(s):  
Quality Of Life ◽  
Primary Sclerosing Cholangitis ◽  
Sclerosing Cholangitis ◽  
Symptom Burden

scholarly journals Quality of life in primary sclerosing cholangitis: a systematic review

2021 ◽  
Vol 19 (1) ◽  
Author(s):  
Elena Marcus ◽  
Paddy Stone ◽  
Anna-Maria Krooupa ◽  
Douglas Thorburn ◽  
Bella Vivat
Keyword(s):  
Quality Of Life ◽  
Systematic Review ◽  
Clinical Research ◽  
Disease Progression ◽  
Primary Sclerosing Cholangitis ◽  
Sclerosing Cholangitis ◽  
Small Sample ◽  
Limited Evidence ◽  
Research Studies

Abstract Background Primary sclerosing cholangitis (PSC) is a rare bile duct and liver disease which can considerably impact quality of life (QoL). As part of a project developing a measure of QoL for people with PSC, we conducted a systematic review with four review questions. The first of these questions overlaps with a recently published systematic review, so this paper reports on the last three of our initial four questions: (A) How does QoL in PSC compare with other groups?, (B) Which attributes/factors are associated with impaired QoL in PSC?, (C) Which interventions are effective in improving QoL in people with PSC?. Methods We systematically searched five databases from inception to 1 November 2020 and assessed the methodological quality of included studies using standard checklists. Results We identified 28 studies: 17 for (A), ten for (B), and nine for (C). Limited evidence was found for all review questions, with few studies included in each comparison, and small sample sizes. The limited evidence available indicated poorer QoL for people with PSC compared with healthy controls, but findings were mixed for comparisons with the general population. QoL outcomes in PSC were comparable to other chronic conditions. Itch, pain, jaundice, severity of inflammatory bowel disease, liver cirrhosis, and large-duct PSC were all associated with impaired QoL. No associations were found between QoL and PSC severity measured with surrogate markers of disease progression or one of three prognostic scoring systems. No interventions were found to improve QoL outcomes. Conclusion The limited findings from included studies suggest that markers of disease progression used in clinical trials may not reflect the experiences of people with PSC. This highlights the importance for clinical research studies to assess QoL alongside clinical and laboratory-based outcomes. A valid and responsive PSC-specific measure of QoL, to adequately capture all issues of importance to people with PSC, would therefore be helpful for clinical research studies.

S1160 Does Primary Sclerosing Cholangitis Impact Quality of Life in Patients with Inflammatory Bowel Disease?

2009 ◽  
Vol 136 (5) ◽  
pp. A-203
Author(s):  
Ashwin N. Ananthakrishnan ◽  
Dawn B. Beaulieu ◽  
Amar S. Naik ◽  
Yelena Zadvornova ◽  
Susan Skaros ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Inflammatory Bowel Disease ◽  
Primary Sclerosing Cholangitis ◽  
Bowel Disease ◽  
Sclerosing Cholangitis ◽  
Inflammatory Bowel

scholarly journals ApaI polymorphism of vitamin D receptor affects health-related quality of life in patients with primary sclerosing cholangitis

PLoS ONE ◽  
2017 ◽  
Vol 12 (4) ◽  
pp. e0176264 ◽  
Author(s):  
Agnieszka Kempinska-Podhorodecka ◽  
Malgorzata Milkiewicz ◽  
Dariusz Jabłonski ◽  
Piotr Milkiewicz ◽  
Ewa Wunsch
Keyword(s):  
Quality Of Life ◽  
Vitamin D ◽  
Primary Sclerosing Cholangitis ◽  
Vitamin D Receptor ◽  
Sclerosing Cholangitis ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Apai Polymorphism

Factors that Influence Health-Related Quality of Life in Patients with Primary Sclerosing Cholangitis

2016 ◽  
Vol 61 (6) ◽  
pp. 1692-1699 ◽  
Author(s):  
Angela C. Cheung ◽  
Harshna Patel ◽  
Javier Meza-Cardona ◽  
Maria Cino ◽  
Sanjeev Sockalingam ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Primary Sclerosing Cholangitis ◽  
Sclerosing Cholangitis ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Does primary sclerosing cholangitis impact quality of life in patients with inflammatory bowel disease?

2010 ◽  
Vol 16 (3) ◽  
pp. 494-500 ◽  
Author(s):  
Ashwin N. Ananthakrishnan ◽  
Dawn B. Beaulieu ◽  
Alex Ulitsky ◽  
Yelena Zadvornova ◽  
Sue Skaros ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Inflammatory Bowel Disease ◽  
Primary Sclerosing Cholangitis ◽  
Bowel Disease ◽  
Sclerosing Cholangitis ◽  
Inflammatory Bowel
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