Characterisation of the associations and impact of symptoms in primary biliary cirrhosis using a disease specific quality of life measure

Fatigue in primary biliary cirrhosis is associated with excessive daytime somnolence

“…The additional strong associations between the ESS and the cognitive, other symptoms, and social and emotional domains of the PBC-40 are likely to reflect the strong overlap seen between these domains and the fatigue domain. 11 No association was seen between any parameter of sleep assessed objectively by Actigraphy and itch severity (Table 5B).…”

“…14 Both correlated with fatigue severity as assessed using, for the first time in this context, a QOL measure specifically designed and optimized for use in PBC. 1,11 In patients with PBC, there was no difference in overall amount of sleep taken over the full 24-hour cycle. However, by considering predetermined time windows, we were able to examine changes in nighttime and daytime sleep patterns.…”

“…Previous studies performed during the validation of the PBC-40 demonstrated strong correlations between individual fatigue domain and other symptom, cognitive, social and emotional domain scores (which, in turn, all correlated with each other), but no correlation with itch domain scores. 11 To draw comparisons between patients with PBC and controls, all participants also completed the FIS, a generic fatigue measure that has been validated for self-completion in PBC and that, in contrast to the PBC-40, is suitable for use in normal control subjects. 8 Sleep Assessment.…”

The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same

“…The focus of management in the majority of chronic disease clinics is often on monitoring the progression of the underlying disease. However, studies exploring the aetiology of fatigue in a number of chronic diseases have shown that the fatigue experienced by patients is unrelated to the underlying disease severity, [10][11][12][13] with the implication that improving chronic disease management may not lead to improvements in the symptoms experienced by patients.…”

Reflections on therapeutic trials in primary biliary cirrhosis: A quality of life oriented counter-view

“…This is particularly important in a condition such as PBC where significant impairment of QOL is recognised, typically resulting from symptoms such as fatigue, which are unrelated to disease severity. [3][4][5][6] The importance of improvement in QOL as a goal of therapy in its own right, is made all the more pertinent by the observation, made so elegantly by Combes and colleagues, that outcomes in terms of survival are actually very good, almost regardless of therapy in young PBC patients with early disease (although it should be noted that the outcome in terms of survival may be less rosy in older patient groups). 7 Whilst the Combes trial looked at end points including mortality, liver transplantation and clinical parameters, there is no mention of symptomatic and/or QOL assessment.…”