James Lind Alliance Priority Setting Partnership in Nutritional Screening and Malnutrition
Dr Sorrel Burden, Clinical Senior Lecturer, University of Manchester
Malnutrition affects about 3 million people and costs the health service £19 billion annually in the UK.1 Nutritional screening is used in the majority of hospitals in the UK to detect malnutrition. The Malnutrition Universal Screening Tool (‘MUST’) has been implemented in most hospitals since it was developed.2 The most recent survey indicates that 29% of patients in hospital are malnourished3 using ‘MUST’. Malnutrition is often unrecognised and is left untreated in many acute and community environments. However, there is evidence demonstrating that when malnutrition is treated there are direct benefits in relation to morbidity and mortality shown in a variety of different situations. Evidence is available in studies on patients undergoing surgery, in chronic conditions and cancer.4, 5
Evidence on malnutrition and nutritional screening has been developed concentrating on screening initiatives in hospital and also on evaluating clinical outcomes. There has been little involvement from patients and carers in setting the research agenda and determining the issues that are poignant in care. Healthcare professionals have been involved in setting research questions from individual perspectives but there has not been an opportunity for dietitians and professionals working in nutrition to directly contribute to setting research questions that would directly influence clinical practice. The Priority Setting Partnership (PSP) is about giving patients, carers and healthcare professionals involved in clinical practice an opportunity to influence the research agenda.
In research it is essential that topics are addressed that are important to the public and also to the patients with the condition. The James Lind Alliance (JLA) is an organisation funded by the National Institute for Health Research and aims to bring together patients, carers and clinical groups in an equal partnership to identify and prioritise evidence uncertainties in specific areas of health. Areas of uncertainty are questions that cannot be answered by the current available evidence base and are important to patients, carers and healthcare professionals. The endpoint of a JLA is a final list of research priorities, usually a top ten jointly agreed at a final workshop.
A JLA uses robust methodology to develop a PSP between patients, carers and professionals. All projects are registered and follow the specified methodology. The purpose is to establish research questions that are of direct relevance to patients and the healthcare professionals that treat them. This highlights gaps in the evidence base for researchers and clinicians so efforts can be concentrated on areas that really matter to patients, carers and professionals.
The JLA Nutritional Screening and Malnutrition PSP was set up in January 2017 and a steering group was orchestrated to manage the process. The first task was to development a protocol to establish the scope of the JLA PSP. Here the terms were defined and we specified our inclusion and exclusion criteria. The PSP included undernutrition, adults and malnutrition across all disease states and all healthcare settings. Treatments for undernutrition were within scope only if they contained macro and micronutrients and were provided with the aim to improve overall nutritional status.
The aim of our JLA PSP was to identify unanswered questions about nutritional screening and malnutrition, diagnosis and treatment. To assist with the JLA PSP we identified partner agencies to help us promote the surveys and also help recruit patients, carers and healthcare professionals to the steering committee and the workshop.
The first step in the process was to gather uncertainties about nutritional screening and malnutrition. To do this we produced a survey that was sent out to our partner agencies for distribution. The partner agencies included: British Association for Parenteral and Enteral Nutrition (BAPEN); British Dietetic Association (BDA); Malnutrition Action Group (MAG); Macmillan; Hertfordshire Independent Living Service (HILS); Salford Royal NHS Foundation Trust; Age UK Salford; Malnutrition Task Force; Wessex Academic Health Science Network (WAHSN); National Care Association; and Care England. The survey was advertised using social media (@malnutritionPSP) and patient websites. The survey consisted of three questions about nutritional screening and malnutrition asking participants what areas they would like to see addressed by research. Following on from this survey was the lengthy task of organising the uncertainties received from the questionnaires. This was conducted using a spreadsheet, where questions provided by the survey respondents were inputted, organised into themes, and similar uncertainties were then grouped together. A lot of cross-checking was completed with the steering group members and all the data and summaries were checked by two people. A systematic review of the literature was undertaken in the form of an umbrella review and this was used to ensure that the submitted questions had not been answered previously. An umbrella review is a review of the literature where systematic reviews are included. Where uncertainties had already been addressed by the current evidence base they were excluded from the list of uncertainties.
A second questionnaire was then sent out asking people to rank their preferences regarding the organised and shortened list of uncertainties. Results of this prioritisation process were then discussed at length in a workshop where patients, carers and healthcare professionals were invited.
Overall, 300 participants took part in this JLA PSP and 1128 questions were originally submitted by 268 people. A shortened list of 81 uncertainties was put forward for the second survey, which 71 people responded to by prioritising the uncertainties that were most important to them. Following this, patients, carers and healthcare professionals were brought together for a one-day workshop and decided on a list of the final top ten priorities.
The final list of priorities included interventions for vulnerable groups, nutritional screening in the community, awareness of malnutrition amongst patients, carers and the public, multiagency working, use of nutritional supplements to treat malnutrition, appropriate use of body mass index to assess nutritional status, community support, use of technology, outcomes for malnourished patients in hospital and whether or not there should be a disease specific approach to treating malnutrition. Interestingly, in the priorities identified for research areas, where uncertainties were found to exist, some of the topic areas have been debated in nutrition for some time. How to access vulnerable groups to undertake nutritional assessments was voted as the number one priority for research, as this is an area that is difficult to address within the community settings. Also, the use of oral nutritional supplements and their added benefit over a food first approach was identified in the top ten, along with the need to engage with technology to research how malnutrition can be identified and treated.
The priorities identified for research questions stemmed from the submitted uncertainties that people, including patients and carers, felt were important. It is anticipated that the results of this JLA PSP will help direct future research projects and target research funding to areas that are important to patients, carers and healthcare professionals.
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References: 1. Stratton R ST, Gabe S. Managing malnutrition to improve lives and save money. www.bapen.org.uk/pdfs/reports/mag/managing-malnutrition.pdf2018.; 2. Elia M. The 'MUST' Report. Nutritional screening of adults: a multidisciplinary responsibility. Development and use of the 'Malnutrition Universal Screening Tool' ('MUST') for adults. 2003.; 3. Russell CA, Elia M and on behalf of BAPEN and collaborators. Nutrition screening survey in hospitals in the UK, 2007-2011 2014.; 4. Burden ST, Gibson DJ, Lal S, et al. Pre-operative oral nutritional supplementation with dietary advice versus dietary advice alone in weight-losing patients with colorectal cancer: single-blind randomized controlled trial. Journal of Cachexia, Sarcopenia and Muscle. 2017; 8: 437-46.; 5. Capra S, Ferguson M and Ried K. Cancer: impact of nutrition intervention outcome and nutrition issues for patients. Nutrition. 2001; 17: 769-72.