Experience, decision-making and information needs around parenteral nutrition among people with advanced cancer, and their carers: a scoping review

Aim To summarise current knowledge and identify gaps in knowledge and research regarding experience, decision-making and information needs around parenteral nutrition, among people with advanced cancer, and their carers. Methods This review was informed by methods outlined by Arksey and O’Malley, Levac and colleagues, and Joanna Briggs Institute guidance on conducting and reporting scoping reviews. A literature search was conducted in March 2021 using Embase, Medline, CINAHL, Google and Web of Science to find studies which examined the experience, decision-making process and information needs of adults with advanced cancer, and their carers, who were making decisions around commencing and discontinuing parenteral nutrition. There were no date limitations but only papers published in English were included. Results Of the 588 papers identified, 12 papers, all qualitative, met the eligibility criteria. Despite the reported negative aspects of home parenteral nutrition, patients and carers felt the benefits outweighed these. There was variability in whether patients and carers felt involved in decisions around commencing parenteral nutrition. No studies specifically addressed information needs. Conclusions Research is required to explore the information that patients with advanced cancer, and their carers, need to facilitate their decision-making around commencing and discontinuing parenteral nutrition. We recommend development of procedures for obtaining written informed consent from patients commencing parenteral nutrition to ensure that core topics are discussed on initiation, enabling patients and carers to make informed decisions. Additionally, we recommend development of a national, standardised framework outlining the discharge process for patients with advanced cancer on home parenteral nutrition.