TY - JOUR
T1 - Symptom patterns in the daily life of PSC patients
AU - van Munster, Kim N.
AU - Dijkgraaf, Marcel G.W.
AU - Oude Elferink, Ronald P.J.
AU - Beuers, Ulrich
AU - Ponsioen, Cyriel Y.
N1 - Funding Information: The study was funded by a grant from Health Holland, project number 180530, and supported by a grant from the Donerik & friends Foundation. Funding Information: 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. Publisher Copyright: © 2022 The Authors. Liver International published by John Wiley & Sons Ltd.
PY - 2022/7
Y1 - 2022/7
N2 - 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.
AB - 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.
KW - cholestatic symptoms
KW - diurnal pattern
KW - experience sampling method
KW - high-density mapping
KW - mobile app
UR - http://www.scopus.com/inward/record.url?scp=85128317752&partnerID=8YFLogxK
U2 - https://doi.org/10.1111/liv.15271
DO - https://doi.org/10.1111/liv.15271
M3 - Article
C2 - 35396817
SN - 1478-3223
VL - 42
SP - 1562
EP - 1570
JO - Liver international
JF - Liver international
IS - 7
ER -