Helping people affected by advanced cancer make informed decisions about home parenteral nutrition

Parenteral nutrition is a nutritional liquid given directly into a vein. It is sometimes used when the gut is not working due to cancer or a side effect of cancer treatment. Today, more people with advanced (incurable) cancer are having parenteral nutrition at home (HPN). This may be because there are now more treatment options for advanced cancer, and people know more about HPN as an option.

From our research we know that patients and carers do not get all the information they need to make decisions about starting or stopping parenteral nutrition. Having parenteral nutrition at home is an important decision, and the benefits, risks and uncertainties need to be clearly explained to patients and carers so they can make an informed choice.

The aim of the COMPANION study is to bring together people with advanced cancer, their carers and healthcare professionals, to coproduce a tool to assist patients and carers to make informed decisions about home parenteral nutrition. Coproduction means bringing together people with lived experience and healthcare professionals in equal partnership to develop the decision tool together.

How can you get involved?

This is a 5-year project, looking for Patient and Public Involvement (PPI) support throughout. You may choose to join for the duration of the project, or for a shorter period. You should have experience of home parenteral nutrition with a diagnosis of advanced cancer or caring/ previously cared for someone with advanced cancer who has/had parenteral nutrition.

The research team are looking for:

• 2 people to join the Study Advisory Group.

They will join online meetings with a group of healthcare professionals from different backgrounds. Online meetings will last approximately 2 hours. This group will provide guidance around delivery of the project and coproduction of the decision tool.

• 6 people to form a Patient and Carer Advisory Group.

This group will support all aspects of the research, including:

1. Shaping the plans for how to share this research with patients, carers, healthcare professionals and members of the public in meaningful ways
2. Developing the recruitment plans for patients and carers invited to take part in the interview study and coproduction of the decision tool
3. Contributing to writing and providing feedback on readability of written resources such as participant information sheets, interview topic guides and consent forms

The group will meet at regular intervals as needed throughout the study period. This may be online and/or in person as decided by the group

Please see the PPI role descriptions on the right side of this page for further information on what involvement will mean for both groups. If you would like to join either group or have any questions about getting involved, please email [email protected]

This study is funded by the National Institute for Health Research (NIHR) [NIHR Doctoral Clinical Practitioner and Academic Fellowship: NIHR306062]. The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.