Gastroenterology services in the UK. The burden of disease, and the organisation and delivery of services for gastrointestinal and liver disorders: A review of the evidence

Purpose of report: This document has been commissioned by the British Society of Gastroenterology. It is intended to draw together the evidence needed to fill the void created by the absence of a national framework or guidance for service provision for the management of patients with gastrointestinal and hepatic disorders. It sets out the service, economic and personal burden of such disorders in the UK, describes current service provision, and draws conclusions about the effectiveness of current models, based on available evidence. It does not seek to replicate existing guidance, which has been produced for upper and lower gastrointestinal cancers, hepatobiliary and pancreatic disorders, and many chronic disorders of the gut. It does, however, draw on evidence contained in these documents. It is intended to be of value to patient groups, clinicians, managers, civil servants, and politicians, particularly those responsible for developing or delivering services for patients with gastrointestinal disorders. Methods used: A systematic review of the literature was undertaken to document the burden of disease and to identify new methods of service delivery in gastroenterology. This systematic review was supplemented by additional papers, identified when the literature on incidence, mortality, morbidity, and costs was assessed. Routine data sources were interrogated to obtain additional data on burden of disease, the activity of the NHS, and costs, in relation to gastrointestinal disorders. The views of users of the service were sought, through discussions with the voluntary sector and through a workshop held at the Royal College of Physicians in December 2004. The views of professionals were obtained by wide dissemination of the document in a draft form, seeking feedback on the content and additional material. Main findings: The burden of gastrointestinal and liver disease is heavy for patients, the NHS, and the economy, with gastrointestinal disease the third most common cause of death, the leading cause of cancer death, and the most common cause of hospital admission. There have been increases in the incidence of most gastrointestinal diseases which have major implications for future healthcare needs. These diseases include hepatitis C infections, acute and chronic pancreatitis, alcoholic liver disease, gallstone disease, upper gastrointestinal haemorrhage, diverticular disease, Barrett's oesophagus, and oesophageal and colorectal cancers. Socioeconomic deprivation is linked to a number of gastrointestinal diseases, such as gastric and oesophageal cancers, hepatitis B and C infections, peptic ulcer, upper gastrointestinal haemorrhage, as well as poorer prognosis for colorectal, gastric, and oesophageal cancers. The burden on patients' health related quality of life has been found to be substantial for symptoms, activities of daily living, and employment, with conditions with a high level of disruption to sufferers' lives found to include: gastro-oesophageal reflux disease, dyspepsia, irritable bowel syndrome, anorectal disorders, gastrointestinal cancers, and chronic liver disease. However, impact on patients is neither fully nor accurately reflected in routine mortality and activity statistics and although overall, the burden of gastrointestinal disease on health related quality of life in the general population appears to be high, the burden is neither systematically nor comprehensively described. An overwhelming finding concerning evidence related to service delivery is the lack of high quality health technology assessment and evaluation. In particular, evidence of cost effectiveness from multicentre studies is lacking, with more research needed to establish a robust evidence base for models of service delivery. Waiting times form the bulk of patients' concerns, with great difficulty in meeting government standards for referral and treatment. An extensive and systematic study of the problem of access for the delivery of gastrointestinal services has yet to be carried out and significant publications reporting inequalities in the delivery of gastrointestinal services are lacking. There is also a need to increase awareness and the implementation of initiatives aimed at improving the information flow between patients and practitioners. Strong evidence exists, however, for a shift in care towards greater patient self management for chronic disease. The development of general practitioners with a special interest in gastroenterology is supported in primary care, but their clinical and cost effectiveness need to be researched. Indeed, emphasis needs to be given to developing interventions to increase preventative activities in primary care, and more research is required to determine their effectiveness and cost effectiveness. Despite strong support for the development and use of widespread screening programmes for a wide variety of gastrointestinal diseases, there is a lack of evidence about how they are managed, their effectiveness, and their cost effectiveness. In contrast, a strong body of evidence exists on diagnostic services, and the need to develop and implement appropriate training and stringent assessment to ensure patient safety. There is also a substantial amount of work detailing guidelines for care. In hospital, patients with gastrointestinal disorders should be looked after by those with specialist training, and more diagnostic endoscopies could be undertaken by trained nurses. Importantly, for service reconfiguration, there is currently insufficient evidence to support greater concentration of specialists in tertiary centres. More research is needed especially on the impact on secondary services before further changes are implemented. Consultant gastroenterologist numbers need to increase to meet a rising burden of gastrointestinal disease. Gastroenterology teams should be led by consultants, but include appropriate non-consultant career grade staff, specialist nurses, and other staff with integrated specialist training, where appropriate. More research is needed into the delivery and organisation of services for patients with gastrointestinal and liver disorders, in particular to assess the clinical and cost effectiveness of general practitioners with a special interest in gastroenterology and endoscopy; the clinical and cost effectiveness of undertaking endoscopy or minor gastrointestinal surgery in diagnosis and treatment centres; and the reconfiguration of specialist services and the potential impact on secondary and primary care and on patients.