Symptoms and health-related quality of life in Japanese patients with primary biliary cholangitis

Abstract

Although patients with primary biliary cholangitis (PBC) experience a variety of symptoms that could impair health-related quality of life (HRQOL), no studies regarding symptoms and impact of PBC on HRQOL have been performed in Asian countries. Herein, we aimed to evaluate symptoms and HRQOL in Japanese PBC patients. We performed a multicenter, observational, cross-sectional study. The PBC-40 and the short form (SF)-36 were used as measures of symptoms and HRQOL. Four-hundred-ninety-six patients with PBC were enrolled. In the PBC-40, the average score was highest in the emotional domain, followed by the fatigue domain. The HRQOL measured using SF-36 was also impaired, especially in the physical and role-social components. After adjustments of variables, female sex, younger age at diagnosis, and lower serum albumin level were independently associated with fatigue scores, while a longer follow-up period and lower serum albumin levels were associated with itch scores.

Figure 1

The average score of each PBC-40 domain in Japanese PBC patients (n = 496) is shown. The score was ranged from 1 to 5. The mean score was 2.0 in symptoms, 1.9 in itch, 2.2 in fatigue, 1.9 in cognitive, 1.9 in social, and 2.6 in emotional.

Figure 2

The number of patients in the four categories of severity, “none”, “mild”, “moderate” and “severe”, of each domain is shown. Four categories were defined as follows; “none” if the score was 0, “mild” if the score was between 0 and the one-third of the full score, “moderate” for scores between one-third and the two-thirds of the full score, and “severe” for scores between the two-thirds of the full score and the full score. (A) symptom. (B) itch. (C) fatigue. (D) cognitive. (E) social. (F) emotional.

Figure 3

(A) The average score of each SF-36 domain in Japanese PBC patients (n = 496) is shown. The score in each domain was 42.8 (PF), 43.4 (RP), 50.9 (BP), 44.5 (GH), 48.1 (VT), 47.1 (SF), 45.3 (RE), and 49.4 (MH). In SF-36, the score 50 was defined as the average of healthy Japanese individuals. PF: physical functioning, RP: role-physical, BP: bodily pain, GH: general health perception, VT: vitality, SF social functioning, RE: role-emotional, MH: mental health. (B) The mean of three summary scores of SF-36, physical component summary (PCS), mental component score (MCS) and role-social component score (RCS) are shown; 371.6, 480.6, and 357.7, respectively.

Figure 4

(A) The average of the PBC-40 fatigue score in males and females. The score was significantly higher in females compared to males (P = 0.001). (B) The average of the PBC-40 fatigue score depending on age at presentation is shown. Patients with younger age at presentation were likely to experience more fatigue (P < 0.001). (C), A scatter diagram with serum albumin level on the X-axis and the score in fatigue domain on the Y-axis, indicating a significant correlation between the serum albumin level and the fatigue score (P < 0.001). (D) The average of the PBC-40 itch score depending on follow-up period (years) is shown. Patients with a longer follow-up period were likely to experience more pruritus (P < 0.001). (E), A scatter diagram with the serum albumin level on the X-axis and the score in the itch domain on the Y-axis, indicating a significant correlation between serum albumin level and itch score (P = 0.029). (F) The average of the PBC-40 itch score depending age at presentation is shown. Patients with younger age at presentation were likely to experience more pruritus (P = 0.008).