Title: Chronic Pancreatitis: Towards a Comprehensive, Patient-Centred, Evidence-Based Model of Nutritional Care
Funder: Health Education England

Abstract: BackgroundChronic pancreatitis (CP) is a complex disease with a variety of clinical features. Main symptoms of CP are crippling abdominal pain, steatorrhoea, and weight loss, frequently requiring hospitalisation. Over time, fibrotic changes lead to progressive reductions in pancreatic exocrine and endocrine function, resulting in pancreatic exocrine insufficiency (PEI), endocrine insufficiency (eventually diabetes mellitus) and chronic, intractable abdominal pain. PEI results in fat malabsorption; clinical consequences of PEI include weight loss and associated malnutrition. Treatment of PEI and associated clinical consequences are priorities in nutritional management of CP. Primary Aim To develop an evidence-based therapeutic intervention to treat nutritional deficiencies and improve quality of life of patients with CP Objectives Undertake a systematic literature review to determine the nature and effectiveness of interventions to treat nutritional deficiencies in patients with CP. Understand how people with CP perceive their nutritional status and treatment of nutritional deficiencies. Determine the current nutritional management of patients with CP by healthcare professions in the UK. Co-develop an evidence-based intervention to treat nutritional deficiencies and improve nutritional status and quality of life (QoL) in people with CP.Methods Objective 1 will involve the completion of a systematic review. Protocols have been written in collaboration with NIHR North East Research Design Service. Objective 2 will be achieved using semi-structured interviews of service users. Participants will be identified and recruited using clinical lists of CP patients and via patient support groups. For objective 3, an online survey will be developed and disseminated to health care professionals (HCP) working with CP patients. Participants will be identified via well-established specialist networks. Objective 4 will involve co-design workshops, attended by patients and a range of HCP, creating an evidence-based intervention. Participants will be recruited from earlier stages of the project.Timelines for delivery Objectives 1-3 will be completed in the first 16 months; objective 4 will take a further 14 months. Publications linked to objectives have been scheduled throughout. Time to write has been allocated at all stages of the fellowship, increasing in the final 12 months. Anticipated impact and dissemination This research will address important gaps research by: a systematic review of nutrition in CP; pioneering research to explore nutritional needs of people suffering from CP and treatment offered from the service users' perspectives; and co-design of treatment with HCP and patients which will ensure the development of a patient-centred intervention. This body of work will be the first to comprehensively evaluate the effectiveness of nutritional interventions in CP. With a uniquely patient-centred approach, this research will investigate patient perceptions of their nutritional management and will be the first of its kind worldwide. I will conduct the first UK-wide analysis of nutritional management of CP by different healthcare professions. Finally, I will use co-design to develop a comprehensive, evidence-based, patient-centred nutritional intervention. Dissemination will be by journal publication, presentation at national and international conferences, via our national pancreatic dietetic body, social media, and crucially, by working closely with national and regional patient support groups.

Lay abstract: Background Chronic pancreatitis (CP) is a complex disease that results in many different symptoms. Alcohol is reported as the main cause, accounting for up to 80% of cases; smoking, gallstones and genetic factors are also causes. The main symptoms of CP are crippling abdominal (stomach) pain, fatty diarrhoea and weight loss, so severe that people may need to be admitted to hospital. These debilitating symptoms are caused by physical changes in the pancreas; gradually the pancreas loses the ability to work properly causing decreased production of digestive enzymes and insulin. This reduced function means that people with CP are not able to digest or absorb their food properly; they can develop diabetes and suffer with long-term severe abdominal pain. Not being able to properly digest food can cause weight loss, poor nutrition and low levels of vitamins and minerals which can have a catastrophic impact on the quality of life of people living with CP. Primary Aim To develop an evidence-based therapeutic intervention to treat nutritional deficiencies and improve quality of life of people with CP Objectives1. To review findings from previously completed research investigating treatment of low weight and weight loss, and how well these treatments worked in people with CP. 2. To interview people with CP to understand how the disease affects their weight, how these issues have affected their lives, and if they received the support they needed for this aspect of their care. 3. To complete a detailed survey of health professionals working with people with CP looking at how weight loss is treated, how well they think these treatments work, and if they believe people with CP receive the support they need for this aspect of their care. 4. People with CP together with a range of health professionals will develop an evidenced-based therapeutic intervention to treat nutrition and weight issues in people with CP, with the aim of improving weight, nutrition and so quality of life. Methods To meet objective 1, I will complete detailed reviews of already-published research. Protocols for these have been written with the help of experts. To meet objective 2, I will conduct interviews of people with CP. People will be identified using clinic lists of patients. To meet objective 3, I will conduct an online survey of health professionals who are working with people with CP. I will look for details of how they treat weight loss and how well they feel these interventions work. Health professionals will be identified via existing specialist networks. To meet objective 4, I will complete a series of workshops with people with CP as well as a range of health professionals. People taking part in earlier stages of the project will be invited to work together with the research team to develop an evidence-based approach to nutritional care. Patient and public involvement The idea for the research was presented at a local support group for people with pancreatitis. Feedback was very positive with people commenting that the project is important, and that they would like to be involved, if possible. There will be an Advisory Group of people with CP that will meet on a regular basis during the project. In addition, the Chair of the local support group will work with the project supervisors and attend project meetings. Reporting of findingsHealth professionals will be informed of findings by publication in scientific journals, conference presentations, social media interaction, and specialist group email circulation. The patient group will contribute to writing reports and presentations to ensure that findings presented to patient groups are accessible to the target audience and reflect patients' perspectives.

Research activity codes: 6.7 PHYSICAL
Health categories: ORAL AND GASTROINTESTINAL;METABOLIC AND ENDOCRINE