The PSC Wellbeing Study
Creating a Personalised Psychological Intervention for PSC: Understanding mental health and wellbeing among people with PSC
Awarded to the Tavistock and Portman NHS Foundation Trust
Dr Eilis Kennedy, Director of Research and Development, Hon. Reader Research Department of Clinical, Educational & Health Psychology UCL, Consultant Child and Adolescent Psychiatrist
Dr Kathy McKay, Research Associate
Dr Veronica Ranieri, Assistant Psychologist
The total grant awarded is £40,000
Duration of award: 01 May 2018 to 01 November 2019
Award details: Creating a Personalised Psychological Intervention for Primary Sclerosing Cholangitis: Understanding mental health and wellbeing among people with PSC
Researchers at the Tavistock & Portman NHS Foundation Trust are investigating the impact of PSC on mental health and wellbeing with the aim of developing a framework that will help people affected by PSC get the psychological support they need.
Why is wellbeing in PSC research important?
There is currently very little research evidence that shows how a PSC diagnosis impacts on the mental health and wellbeing of a person, and their partners and families. However, PSC Support has identified that there is a significant impact on emotional wellbeing when living with PSC yet a lack of psychological support for both patients and their families and loved ones. This research study aims to investigate that impact and develop a Personalised Psychological Intervention framework for PSC.
This research is funded by PSC Support. It is conducted by researchers at the Tavistock & Portman NHS Foundation Trust, with consultation from PSC Support.
The PSC Wellbeing Study Output
We demonstrated the lack of attention to the psychological wellbeing of people with PSC:
Ranieri V, McKay K, Walmsley M, Senior R, Thorburn D, Kennedy E. Primary sclerosing cholangitis and psychological wellbeing: a scoping review. InSeminars in liver disease. 2018 Nov 22. Thieme Medical Publishers. Open Access doi: 10.1055/s-0038-1676099
We demonstrated that it is possible to conduct inclusive research even though PSC is a rare disease (oral presentation):
McKay K, Ranieri V, Walmsley M, et al. O16 Rare but still heard: how innovative methods can enhance research inclusion. BMJ Open 2019;9:doi: 10.1136/bmjopen-2019-QHRN.16
We formally shared the PSC Wellbeing Study methodology in the British Medical Journal:
Ranieri V, Kennedy E, Walmsley M, et al. Rare but heard: using asynchronous virtual focus groups, interviews and roundtable discussions to create a personalised psychological intervention for primary sclerosing cholangitis: a protocol. BMJ Open 2019;9:e031417. doi: 10.1136/bmjopen-2019-031417
We've articulated the psychological distress experienced by people living with PSC and those who Support them:
Ranieri V, Kennedy E, Walmsley M, Thorburn D, McKay K. The Primary Sclerosing Cholangitis (PSC) Wellbeing Study: Understanding psychological distress in those living with PSC and those who support them. PLoSONE 2020 15(7): e0234624. https://doi.org/10.1371/journal.pone.0234624