A new research study is looking for volunteers from across the UK who are caring, or have cared, for someone with advanced cancer who is on parenteral nutrition.

The INPUT study – Information Needs around Parenteral nUTrition in Cancer – is looking at how informed decisions are made to start or stop parenteral nutrition in people with advanced cancer.

Parenteral nutrition (PN) is a type of nutritional liquid given directly into a vein, and usually given when a patient does not have a functioning digestive system. This type of nutrition is managed by a team of healthcare professionals and requires regular monitoring, such as blood tests, to allow the team to provide the right balance of nutrients to the individual patient.

The decision to start or stop PN is an important one. The benefits, risks and consequences should be fully explained to the patient and carer, to make sure they can make an informed decision.

Currently, it is not clear if patients and carers get all the information they need, and often the decision is made by a doctor and other healthcare professionals. However, patients have a right to make decisions about their care, and to involve their carer in decision-making.

The aim of this study is to find out what information carers feel they need to be able to make a decision to start, and a later date stop, parenteral nutrition, with a diagnosis of advanced (incurable) cancer.

Jennifer McCracken, lead researcher at The Royal Marsden, said: ‘We are looking to interview carers who have experience of making this decision, to find out what information was important to them. Our aim is to use the results from this research to improve the experience that patients and carers have in the future’.

To take part carers must either:

  • Be caring for a person with advanced cancer who is considering starting parenteral nutrition
  • Be caring for a person with advanced cancer who is receiving parenteral nutrition
  • Have cared for a person with advanced cancer who received parenteral nutrition within the last 12 months.

Volunteers will need to participate in a telephone or online interview, lasting between 30-60 minutes.

A video about the study is available here. 

For more information please contact Lead Researcher, Jennifer McCracken: Jennifer.McCracken1@nhs.net