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

Ananthakrishnan, Ashwin N.; Beaulieu, Dawn B.; Ulitsky, Alex; Zadvornova, Yelena; Skaros, Sue; Johnson, Kristen; Naik, Amar S.; Perera, Lilani P.; Issa, Mazen; Binion, David G.; Saeian, Kia

doi:10.1002/ibd.21051

Cited by 26 publications

(29 citation statements)

References 26 publications

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“…A total of 213 participants had a low adherence score (36.2%), 199 medium adherence (33.8%) and 176 high adherence (29.9%). Mean quality of life as measured by the SIBDQ score was 51 (SD=11.1), which is consistent with reported means for mild or inactive IBD(2, 10, 21, 22). Mean short Crohn’s Disease Activity Index was 52.1, indicating inactive disease.…”

Section: Resultssupporting

confidence: 84%

Patient Perception of Chronic Illness Care in a Large Inflammatory Bowel Disease Cohort

Randell

Long

Martin

et al. 2013

Inflammatory Bowel Diseases

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Background Improvements in care for inflammatory bowel diseases (IBD) could utilize the Chronic Care Model (CCM), an evidence-based approach that has improved patient outcomes and reduced costs in other illnesses. Specific aims include: (1) To explore patient perception of chronic illness care in a large IBD cohort, (2) To determine whether demographic factors, medication adherence, quality of life, disease type and activity were associated with perception of chronic illness care. Methods We randomly selected 1000 participants from the CCFA Partners internet cohort to receive the validated Patient Assessment of Chronic Illness Care (PACIC) instrument, which measures patient experience with specific aspects of care congruent with the CCM on a scale of 1–5, with 5 being highest perception of care. We used descriptive and bivariate statistics to assess relationships. Results 945 participants completed the PACIC [576 Crohn’s disease, 339 ulcerative colitis, 30 indeterminate or other, 74% female, mean age 45 (SD=15.1), mean PACIC 2.4 (SD=0.93)]. Recent gastroenterologist visit, hospitalization, surgery and current pouch/ostomy were all associated with significantly higher PACIC (p<0.05). PACIC correlated positively with quality of life (Pearson correlation=0.12, p=0.003) but not medication adherence or disease activity. Conclusions Reports of chronic illness care in this IBD cohort are in the same range as other illnesses. PACIC is positively associated with quality of life, so efforts to align care with the CCM may benefit this population. Subjects who had more sub-specialty interactions reported an increased perception of care, indicating the important role of direct patient contact.

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Section: Resultssupporting

confidence: 84%

Patient Perception of Chronic Illness Care in a Large Inflammatory Bowel Disease Cohort

Randell

Long

Martin

et al. 2013

Inflammatory Bowel Diseases

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“…To create a homogeneous group of patients, the inclusion criteria were stringent. We excluded patients with abnormal liver tests or known liver diseases to avoid basal perturbations of BA biosynthesis, which may be observed—for example, in cholestatic diseases, such as primary sclerosing cholangitis (often associated with IBD) 33 34. As the terminal ileum is the site of BA reabsorption,35–37 CD patients with ileal involvement were also excluded by principle.…”

Section: Discussionmentioning

confidence: 99%

Connecting dysbiosis, bile-acid dysmetabolism and gut inflammation in inflammatory bowel diseases

Duboc

Rajca

Rainteau

et al. 2012

Gut

693

629

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“…In a small, retrospective, case–control study, the presence of PSC in patients with IBD did not significantly impair HRQOL but was associated with higher rate of work disability . However, two more recent and larger studies demonstrated a significant association between PSC and impaired HRQOL .…”

Section: Primary Sclerosing Cholangitismentioning

confidence: 85%

Complications, symptoms, quality of life and pregnancy in cholestatic liver disease

Zakharia

Tabibian

Lindor

et al. 2017

Liver International

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Cholestatic liver diseases (CLDs) encompass a variety of disorders of bile formation and/or flow which generally result in progressive hepatobiliary injury and ultimately end-stage liver disease. Many patients with CLD are diagnosed between the ages of 20-50 years, a particularly productive period of life professionally, biologically and in other respects; it is not surprising, thus, that CLD is often associated with impaired health-related quality of life (HRQOL) and uncertainty regarding implications for and outcomes of pregnancy. Primary sclerosing cholangitis (PSC) and primary biliary cholangitis (PBC) are the most prominent CLDs, both having considerable morbidity and mortality and representing major indications for liver transplantation. These disorders, as a consequence of their complications (eg ascites, hepatic osteodystrophy), associated conditions (eg inflammatory bowel disease) and symptoms (eg pruritus and fatigue), can significantly impair an array of domains of HRQOL. Here we review these impactful clinical aspects of PSC and PBC as well as the topics of fertility and pregnancy.

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

Abstract: PSC does not seem to influence disease-specific HRQoL in our patients with IBD but is associated with a higher rate of work disability.

Cited by 26 publications

References 26 publications

Patient Perception of Chronic Illness Care in a Large Inflammatory Bowel Disease Cohort

Patient Perception of Chronic Illness Care in a Large Inflammatory Bowel Disease Cohort

Connecting dysbiosis, bile-acid dysmetabolism and gut inflammation in inflammatory bowel diseases

Complications, symptoms, quality of life and pregnancy in cholestatic liver disease

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