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The PSC Wellbeing Study

Understanding psychological distress in those living with PSC and those who support them

The PSC Wellbeing Study

PSC Wellbeing Project

Researchers have today published an article based on learning from research funded by PSC Support called the PSC Wellbeing Project. The aim was to explore how PSC impacts the lives of both those diagnosed with PSC and those supporting them through a series of online focus groups. We are very grateful to the thirty people who took part.

Lived Experience of PSC

These patients and family members shared their experiences of receiving a diagnosis, and adjusting to life post-diagnosis, particularly in regard to their relationships with health professionals and other family members, and in preparing for the possibility of transplant.

Psychological Distress

The focus groups revealed the difficulties that many people affected by PSC face, from the shock of diagnosis, its sometimes hastily delivery, anxiety at what the future might hold, getting the right information about PSC, low mood, the decision to share the diagnosis with others, and the impact of PSC on other aspects of life, both physically and emotionally.

Tips to Improve Psychological Wellbeing

The researchers compiled tips from the participants to suggest ways to help improve the psychological wellbeing of other individuals with PSC, caregivers and healthcare professionals. We have summarised the tips for patients and healthcare professionals below:

Tips on Living with PSC for Patients

Tips for Healthcare Professionals

Reference
Ranieri V, Kennedy E, Walmsley M, Thorburn D, McKay K (2020) The Primary Sclerosing Cholangitis (PSC) Wellbeing Study: Understanding psychological distress in those living with PSC and those who support them. PLoSONE 15(7): e0234624. https://doi.org/10.1371/journal.pone.0234624