COMPANION: Co-production of a decision tool for people with advanced cancer considering home parenteral nutrition

Parenteral nutrition (PN) is a form of liquid nutrition delivered intravenously. It is typically used when someone does not have a functioning gastrointestinal tract. People with advanced (incurable) cancer may require PN due to their cancer or cancer treatment. Use of home PN (HPN) has increased among people with cancer in recent years, most of whom have advanced cancer. Despite this, research has shown that patients and carers do not receive adequate information about the risks and benefits of PN, managing complications, what to expect on HPN or discussions around reasons for stopping PN. Research question How can we support people with advanced cancer, and their carers, to make shared decisions with healthcare professionals about commencing and discontinuing home parenteral nutrition? Study aims To systematically review the literature to identify tools used to support decision-making around artificial nutrition in incurable illness, their impact, and barriers and facilitators to their use. To explore the best ways to facilitate shared decision-making around HPN among people with advanced cancer, their carers and healthcare professionals. To co-produce a decision tool for people with advanced cancer to support them to make decisions around commencing and discontinuing HPN with their carer(s) and healthcare team. Methods The research question will be answered through three work packages: Systematic review Studies exploring the use of artificial nutrition decision tools in incurable illness will be identified through a literature search, with no date limitations. Two authors will screen all articles for eligibility, extract data and conduct quality assessment. Findings will be presented as descriptive statistics and a narrative synthesis. Quality assessment will be conducted. Qualitative interview study Semi-structured interviews will be conducted with people with advanced cancer on HPN, their carers and healthcare professionals. This will be underpinned by Interpretative Phenomenological Analysis. A patient or public contributor will support thematic data analysis and interpretation. Co-production workshops A decision tool prototype will be co-produced with people with advanced cancer, their carers and healthcare professionals in two workshops. A matrix approach will be taken, whereby findings from the systematic review, qualitative interviews and previous research will be synthesised. The prototype will be refined between workshops then user-tested and refined further, ready for feasibility testing. Anticipated impact Development of educational tools to support training for healthcare professionals. This study will form the preliminary work for conducting a feasibility study of the co-produced decision tool in clinical practice. The decision tool is intended for use by healthcare professionals to aid communication with patients and carers, ensuring options, risks, benefits and uncertainties are discussed, enabling them to make an informed decision to commence or discontinue HPN. Dissemination Reports from each work package will be written for publication in peer-reviewed journals and shared at conferences. Artwork will be developed from findings of earlier work packages for discussion at co-production workshops and shared publicly via social media. Dissemination plans will be developed further with a patient and carer advisory group.