Optimising the long term care of people with coeliac disease in the UK National Health Service (NHS) using patient-level data
Joe West, Professor of Epidemiology; Honorary Consultant Gastroenterologist, Faculty of Medicine & Health Sciences, University of Nottingham
Thomas Fanshawe, Senior Statistician & Lecturer, Nuffield Department of Primary Care Health Sciences, University of Oxford
Coeliac disease is a chronic disease of the gut. The only available treatment is a lifelong exclusion of gluten from daily diet. Management can be tricky, with some individuals experiencing significant interference with everyday life. Approximately 200,000 people in the UK have been diagnosed with coeliac disease and the incidence is increasing. High quality and appropriate long-term management of this condition is crucial, however currently no good evidence exists to shape guidelines that can meaningfully improve the day-to-day lives of people with coeliac disease.
Despite this worrying lack of evidence, the National Institute for Health and Care Excellence (NICE) and gastroenterology societies have published national guidelines about long term follow up of people with coeliac disease. These recommend offering a single strategy for all consisting of yearly face-to-face check-ups with a health care professional. However, only about half of people with coeliac disease attend these currently. Increasing attendance would mean a large amount of extra money would need to be spent by the NHS on a service for which there is minimal evidence that it would improve lives. Instead those resources could be used to provide a personalised suite of services that better matches the individuals’ needs and preferences, and maximises patients' health related quality of life.
This project aims to provide real world evidence to underpin future economic models and clinical trials to ensure optimal long-term follow-up for people with coeliac disease in the NHS. Data from the UK Clinical Practice Research Datalink (CPRD, primary care dataset, https://www.cprd.com/ ), linked with the Hospital Episode Statistics (HES, hospital admissions dataset, https://digital.nhs.uk/data-and-information/data-tools-and-services/data-services/hospital-episode-statistics ) and multiple deprivation data will be analysed using appropriate statistical and economic methods, in order to:
- describe and quantify what care is currently provided in the NHS for people with coeliac disease;
- quantify any socio-demographic inequalities in care provision that may exist;
- quantify what it currently costs the NHS to provide follow-up services for people with coeliac disease;
- estimate what it might it cost if NICE or other guidelines were followed in full;
- explore what the long term follow-up for people of coeliac disease could look like in the future.
Kurien, M., N. Trott, and D.S. Sanders, Long-term care for patients with coeliac disease in the UK: a review of the literature and future directions. J Hum Nutr Diet, 2016. 29(5): p. 617-23.
NICE. Quality Standard (Coeliac disease QS134). 2016; Available from: nice.org.uk/guidance/qs134.
NICE. Coeliac disease: recognition, assessment and management (Clinical guideline NG20). 2015; Available from: http://www.nice.org.uk/guidance/ng20
Violato M, Gray A, Papanicolas I, and Ouellet M. Resource Use and Costs Associated with Coeliac Disease before and after Diagnosis in 3,646 Cases: Results of a UK Primary Care Database Analysis. PLoS ONE 2012; 7(7): e41308. doi:10.1371/journal.pone.0041308.
West, J., et al., Incidence and prevalence of celiac disease and dermatitis herpetiformis in the UK over two decades: population-based study. Am J Gastroenterol, 2014. 109(5): p. 757-68.
RESEARCH EXPERIENCE, RESEARCH METHODS AND TRAINING
The studentship will involve generic research skills such as reviewing the literature, developing hypotheses, analyzing quantitative data, interpreting and writing up results. The candidate will gain in-depth knowledge in the area of coeliac disease and associated health services research; epidemiological, statistical and economic methodology, and analysis of large and complex individual-level linked datasets. We anticipate that the successful candidate will have some previous statistical/economic and/or epidemiological experience, and they will receive support and training in methods as required.
FIELD WORK, SECONDMENTS, INDUSTRY PLACEMENTS AND TRAINING
Fieldwork, secondment or industry placements are not required for this study. Training in specific methods and transferable skills will be provided, as needed. The project will be based at the Health Economics Research Centre, Nuffield Department of Population Health, with supervision provided by experienced members of staff (health economist, epidemiologist/clinician and statistician). The candidate will have the opportunity to present their work at national and/or international conferences, as appropriate to the topic.
The successful candidate will have a strong interest in the area of the epidemiology and economics of coeliac disease and statistical methods of analysis of large routine datasets, a Bachelor’s or Master’s degree in Health Economics, Economics, Statistics, Epidemiology or other quantitative discipline, very good quantitative and data analysis skills. Good interpersonal and communication skills and the ability to work successfully in a multidisciplinary environment are also essential.