Open Access Research article

The communication of a secondary care diagnosis of autoimmune hepatitis to primary care practitioners: a population-based study

Fumi Varyani1*, Timothy Card12, Philip Kaye3, Guru P Aithal1 and Joe West2

Author Affiliations

1 Department of Gastroenterology, Queens Medical Centre, Nottingham University Hospital NHS Trust, Derby Road, Nottingham, NG7 2UH, United Kingdom

2 Department of Epidemiology and Public Health, Clinical Sciences Building, Nottingham City Hospital, Nottingham, NG5 1 PB, United Kingdom

3 Department of Pathology, Queens Medical Centre, Nottingham University Hospital NHS Trust, Derby Road, Nottingham, NG7 2UH, United Kingdom

For all author emails, please log on.

BMC Health Services Research 2013, 13:161  doi:10.1186/1472-6963-13-161

Published: 1 May 2013



Autoimmune Hepatitis is a chronic liver disease which affects young people and can result in liver failure leading to death or transplantation yet there is a lack of information on the incidence and prevalence of this disease and its natural history in the UK. A means of obtaining this information is via the use of clinical databases formed of electronic primary care records. How reliably the diagnosis is coded in such records is however unknown. The aim of this study therefore was to assess the proportion of consultant hepatologist diagnoses of Autoimmune Hepatitis which were accurately recorded in General Practice computerised records.


Our study population were patients with Autoimmune Hepatitis diagnosed by consultant hepatologists in the Queens Medical Centre, Nottingham University Hospitals (UK) between 2004 and 2009. We wrote to the general practitioners of these patients to obtain the percentage of patients who had a valid READ code specific for Autoimmune Hepatitis.


We examined the electronic records of 51 patients who had biopsy evidence and a possible diagnosis of Autoimmune Hepatitis. Forty two of these patients had a confirmed clinical diagnosis of Autoimmune Hepatitis by a consultant hepatologist: we contacted the General Practitioners of these patients obtaining a response rate of 90.5% (39/42 GPs). 37/39 of these GPs responded with coding information and 89% of these patients (33/37) used Read code J638.00 (Autoimmune Hepatitis) to record a diagnosis.


The diagnosis of Autoimmune Hepatitis made by a Consultant Hepatologist is accurately communicated to and electronically recorded by primary care in the UK. As a large proportion of cases of Autoimmune Hepatitis are recorded in primary care, this minimises the risk of introducing selection bias and therefore selecting cases using these data will be a valid method of conducting population based studies on Autoimmune Hepatitis.