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. 2022 Jul;42(7):1562-1570.
doi: 10.1111/liv.15271. Epub 2022 Apr 18.

Symptom patterns in the daily life of PSC patients

Kim N van Munster  1 , Marcel G W Dijkgraaf  2 , Ronald P J Oude Elferink  3 , Ulrich Beuers  1 , Cyriel Y Ponsioen  1
Affiliations

Symptom patterns in the daily life of PSC patients

Kim N van Munster et al. Liver Int. 2022 Jul.

Abstract

Background & aims: Patients with primary sclerosing cholangitis (PSC) may suffer from complaints such as pruritus, right upper abdominal quadrant pain (RUQ-A) and fatigue. However, the severity of these complaints, daily and/or seasonal patterns and other factors of influence in PSC are largely unknown. The aim of this study is to assess daily symptoms and patterns thereof in PSC patients in their natural setting.

Methods: A mobile application was designed according to the experience sampling method. Push notifications with a response time of max 4 h were sent during tiers of 3 months. Questions comprised VAS scales on degree of pruritus, fatigue, RUQ-A, time of the day these symptoms were worst, as well as time of intake of medication. Linear mixed modelling was used to identify patient- and external factors associated with pruritus, fatigue and RUQ-A pain.

Results: A total of 6713 questionnaires were completed by 137 patients. Fatigue was the most prevalent symptom among PSC patients being reported in a striking 71% of measurements, followed by pruritus (38%). Both increased during the day and were associated with longer disease duration. A highly significant correlation between pruritus and day temperature was observed (ρ = -0.14, p = .000), and itch was generally worse during winter (p = .000). Patient preference for the tool was high.

Conclusion: Pruritus and fatigue are prevalent symptoms in the daily life of PSC patients and show a distinct diurnal pattern. This may have implications for efficient dosing of anti-pruritic agents. The level of pruritus is highly correlated with day temperature, which may have several implications.

Keywords: cholestatic symptoms; diurnal pattern; experience sampling method; high-density mapping; mobile app.

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Conflict of interest statement

CYP has received research grant funding from Takeda, Gilead and Perspectum, advisory fees from Pliant and Shire and speaker's fees from Takeda, Tillotts. KNM, MGD, ROE and UB declare no conflicts of interest.

Figures

FIGURE 1
FIGURE 1
VAS score distribution of pruritus, fatigue and RUQ‐A pain
FIGURE 2
FIGURE 2
Patients' reported moment of most severe pruritus (A), fatigue (B) and RUQ‐A pain (C) in the previous 24 h
FIGURE 3
FIGURE 3
Severity of pruritus (A), fatigue (B) and RUQ‐A pain (C) in winter, autumn, spring and summer measured by VAS
FIGURE 4
FIGURE 4
Association between pruritus and day temperature (A) and humidity (B) and fatigue and sunshine hours (C) and cloud coverage (D)
See this image and copyright information in PMC

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