This project has been based on the principles of the James Lind Alliance (JLA) and aims to inform those that fund health research what really matters to patients, carers and healthcare professionals in the area of home parenteral nutrition (HPN).
Within this project HPN is defined as the provision of intravenous supplementation, either fluids and electrolytes alone or nutrition admixtures, outside the hospital setting. We will consider separately the views of patients using HPN with benign intestinal failure and those with a cancer diagnosis.
This study will recruit patients, carers and healthcare professionals from the U.K. America, Italy, Denmark, Belgium and Poland to identify uncertainties about HPN. All responses will be categorised and refined into summary questions that are addressable by research, unanswered in the literature and understandable to all. A steering committee will identify the top 25 questions which capture the key themes and topics that are most prevalent from the responses. The top 25 questions will then be prioritised through the help of patients, carers, healthcare professionals and finally an expert steering committee. A list of the top ten prioritised uncertainties will be agreed, published and taken to research commissioning bodies to be considered for funding. This process is important to ensure that the issues that matter most to those with experience of HPN are prioritised for future research.
The protocol for this study can be viewed by clicking the link under 'Documents', to the right of this description.
For more information or to get involved with the study follow the link to the website.
The identification and prioritisation of data will be collected between April and October 2021. A final workshop will be held in November 2021 to identify the top ten priorities in the area of home parenteral nutrition. The Steering Group will then disseminate the findings to researchers, funders and the patient and clinical communities.