Health‐related quality of life among patients with primary sclerosing cholangitis

Abstract

Newly diagnosed PSC patients have better HRQoL than do IBD patients, and no significant HRQoL changes were observed in the mean follow-up of 1.58 years after PSC diagnosis. ERC findings did not correlate with HRQoL or symptoms. HRQoL of PSC patients was mostly comparable with that of general population, but special attention should be paid to patients' psychological well-being.

Autoimmune hepatitis exerts a profound, negative effect on health‐related quality of life: A prospective, single‐centre study

“…This is in stark contrast to, for example, chronic autoimmune cholestatic diseases which may affect a comparable number of adults. Indeed, HRQoL has been thoroughly investigated in primary biliary cholangitis (PBC) and primary sclerosing cholangitis (PSC) showing that both conditions significantly affect patient well‐being . Everyday clinical experience clearly demonstrates that individuals with AIH also struggle with serious symptoms significantly affecting their well‐being.…”

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

“…Though not well‐studied, acquisition of medical care (taking time off school and/or work, arranging transportation, undergoing invasive procedures) can itself be cumbersome and negatively impactful on HRQOL. It is worth mentioning that while the prevalence of major depression in patients with PSC does not appear to be increased compared to the general population (based on diagnostic and statistical manual IV criteria), patients with PSC report more symptoms of depression and have lower (ie worse) scores in many psychometric dimensions of well‐being . Moreover, in a recent study, approximately 75% of patients with PSC expressed anxiety symptoms regarding progression of their disease and decreased life expectancy, with 25% also reporting consequent social isolation .…”

“…Fatigue in chronic CLD is a common occurrence associated with impaired HRQOL, depression, and other sequelae . Unfortunately, its etiology remains uncertain, and to date there is no known effective therapy.…”

“…Fatigue in chronic CLD is a common occurrence associated with impaired HRQOL, depression, and other sequelae. 46,[55][56][57][58] Unfortunately, its etiology remains uncertain, and to date there is no known effective therapy. Given fatigue is a non-specific finding and does not correlate with severity of liver disease 46,59 ; prior to potentially ascribing fatigue to PSC, it is important to rule out other causes which may be treatable.…”

Quality of life and primary sclerosing cholangitis: The business of defining what counts

“…PSC is symptomatic in the majority and, above all for individuals living with this disease, provokes anxiety in patients, family, and carers. When asked, patients will readily volunteer the impact of pain, itch, fatigue, and uncertainty . One online survey run by PSC Support (http://www.pscsupport.org.uk) involving over 1,000 respondents found that the most difficult thing for patients about living with PSC was the impact on their emotional well‐being (cited by 74% of respondents), with specific concerns including uncertainty about the future, helplessness, and concern about their medical care and monitoring.…”