The role of psychological factors in the fatigue of primary biliary cirrhosis

Abstract

Fatigue impairs the quality of life of primary biliary cirrhosis (PBC) patients. In this study, we explored the psychological factors and coping strategies in fatigued PBC patients. Patients participated in a semi-structured interview examining thoughts regarding the impact of fatigue and coping strategies. All completed the disease-specific quality-of-life tool, PBC-40, the Penn State Worry Questionnaire (PSWQ) (degree of habitual worry) and Hospital Anxiety and Depression Scale (HADS) (current anxiety and depression). PBC patients were allocated into high (>38, n=10) and low-fatigue (<38, n=14) groups. No differences were seen between high-fatigue and low-fatigue groups regarding age, marital status, employment status, PBC stage, years with diagnosis and years experiencing fatigue. High-fatigue participants were significantly more anxious (P=0.008), more depressed (P<0.001), and more likely to worry (<0.05). High-fatigue participants had more frequent thoughts about the impact of fatigue (P<0.005) and lower self-efficacy scores (P<0.001). In conclusion, PBC patients can experience profound distress associated with fatigue. PBC patients with high levels of fatigue seem to be more vulnerable to emotional distress, more likely to perceive that their quality of life has been negatively affected and are less confident to engage in everyday activities compared with those with low levels of fatigue.

Impact of primary biliary cirrhosis on perceived quality of life: The UK-PBC national study

“…Taken together, these findings suggest that, whereas fatigue is a highly significant Control values are for an age-and sex-matched control population not preselected for symptom severity who completed a version of the PBC-40 (the PBC-40c) which was validated for completion by non-PBC patients for the purposes of this study and which was found to demonstrate construct validity (Supporting Table 1). In addition to the potentially generic symptom domains demonstrated in this figure, the impact of pruritus and general PBC symptoms was unsurprisingly greater in PBC patients than in matched controls (pruritus: PBC-40 pruritus domain score median 4 [interquartile range 0-9 in PBC patients versus 2 [0-3] in controls, P < 0.0001; general PBC symptoms 16 [12][13][14][15][16][17][18][19][20] versus 10 [8-13], P < 0.0001). Dotted lines for each symptom domain represent the cutoff for clinically significant symptoms (defined as mean value for normal subjects 12 SD).…”

“…How patients adapt to and cope with their fatigue is thus critical for how symptoms result in QOL. 20 …”

“…This observation builds on previous findings to suggest that coping strategies are important for perception of life quality in PBC. 20 In practical terms the implication of this observation that, in the absence of any proven medical therapy able to reduce the impact of fatigue in PBC, a focus on helping patients to cope with fatigue, including through bolstering their social Fig. 4.…”

“…Depression and anxiety symptoms are seen in PBC patients and contribute to distress and poor coping capacity. 20 The extent to which these symptoms differ from the nondisease population and the interrelation with other symptom sets in PBC (most specifically fatigue) has not been comprehensively addressed to date. HADS is a validated anxiety and depression measure optimized for use in patients with chronic disease.…”

“…It has previously been applied in PBC. 20 Individual subscales reflecting anxiety and depression comprise seven items, each with a potential score of 0-21. Clinical cutoffs are variable.…”