Pioneering intestinal failure study focuses on quality of life

Intestinal failure patients at Salford Royal are taking part in a pioneering study into a new treatment that could improve their quality of life.

The hospital’s Intestinal Failure Unit is currently the only adult centre in the UK offering this medication to patients.

People with short bowel syndrome and intestinal failure cannot absorb sufficient nutrition from food via the intestines and depend on artificial feeding given directly into the vein – a process known as parenteral nutrition.

The drug teduglutide has been licensed for use in these patients to promote growth and repair of the intestine – it is similar to a hormone naturally produced by the body – and it could mean they can reduce or even stop parenteral nutrition.

The new research study will look at the experiences of eight patients taking teduglutide and how the treatment – and the close medical monitoring they will receive – affects their quality of life.

The study is being led by Dr Sorrel Burden and Dr Anne Marie Sowerbutts  from  The University of Manchester, and Professor Simon Lal, who heads the Intestinal Failure Unit at Salford Royal.

It is sponsored by the university and will involve eight adult patients having daily injections of the drug under the skin at home for a year – this will be done by the patients or their carers.

As well as having regular checks in clinic, patients will also have a weekly phone call from a nurse and be interviewed in depth about their daily lives during the study. Family or close friends will also be interviewed.

Professor Lal said: “Teduglutide is licensed for use in patients with short bowel syndrome but isn’t yet being used for adults in the UK except in this study. It could make a huge difference to these patients’ lives by reducing the volume of parenteral nutrition they need – that might mean they don’t have to have parenteral nutrition every night for instance.

“But some people have experienced side effects with this treatment so we will be monitoring patients very closely with clinic appointments, remote reviews via Skype, Facetime or Zoom and weekly phone calls.

“We are asking patients to take photographs showing their life on parenteral nutrition, to fill in questionnaires about their quality of life and for them and their families to be interviewed about their health, activities and how they are feeling.

“This is a rare condition but one that has a major impact on people’s lives so it is important that we carry out research like this to help us refine the treatment and the information we give about it to patients.”