The PSC Wellbeing Study

Creating a Personalised Psychological Intervention for PSC: Understanding mental health and wellbeing among people with PSC

PSC Wellbeing Study

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 reviewInSeminars 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 are your voice

Take a survey to tell us what you think. #LetsBeatPSC

Donate

We rely on charitable donations to make our vital work possible

Want to know more?

Receive regular info, tips and news on all things PSC