Summary
In 2009 an audit identified a sizeable gap between those diagnosed with hepatitis C and those seen at the specialist hepatitis C clinic. Subsequently it was decided that the Hepatitis B&C Managed Clinical Network Coordinator would follow up every confirmed hepatitis C polymerase chain reaction (PCR) positive case for which there was no referral received for specialist assessment.
Now all new referrals to the liver unit at the Royal Victoria Hospital for assessment of hepatitis C are entered into a referral/treatment database. The positive test result list is cross-referenced with the referral database and the hospital patient administration system to identify patients not referred within 4-6 months of the test and measures are taken when patients have not been referred. The team can now account for 100% of PCR-positive cases and virtually every patient who should be referred is being referred to treatment services.
Challenge
In Northern Ireland Hepatitis C (HCV) is not a notifiable infection. A 2009 MCN audit looked at referral rates to the HCV clinic for new HCV polymerase chain reaction (PCR) positive cases. Thirty five per cent had failed to attend the HCV clinic; 10 per cent had been referred, but failed to attend (including one who was deceased), and 25 per cent were not referred. Thirty eight per cent of the HCV positive tests originated from GPs, the rest from specialist services.
Among GP-screened patients not referred, the most common reason was patient choice. The audit concluded that the non-referral rate for newly diagnosed HCV PCR positive patients is 25 per cent, compared with 30 per cent in 2007.
Objectives
The objective was to close the gap between those testing positive and those being referred for specialist assessment at a hepatitis clinic. The project aimed to do so by providing information to clinicians at the time of diagnosis, with reminder letters and follow-up phone calls if the referral was still not made.
It was decided that the Hepatitis B&C Managed Clinical Network (MCN) would retrospectively follow up every four to six months on every laboratory-confirmed polymerase HCV PCR-positive cases for which there was no record of a referral being received for specialist assessment at the Royal Victoria Hospital liver clinic in Belfast.
Solution
Clinicians and patients were not always aware of the importance of timely referral directly to the specialist HCV clinic. The Hepatitis B and C MCN developed a clinician’s factsheet for the laboratory to send to the referring clinician with each new HCV diagnosis.
This outlines what to tell the patient about HCV and reminds the clinician to refer the patient for specialist care. A leaflet about hepatitis C and useful local contacts is also sent for the clinician to give to the patient.
All new referrals to the HCV clinic are now entered into a referral/ treatment database. The Regional Virus Lab (RVL) generates output of HCV PCR positive results – this is cross-referenced with the referral database to identify patients not referred within four to six months of a positive test. Letters are sent, followed by a pre-scripted phone call to encourage referral.
Results
From September 2009 to December 2013, 510 laboratory-confirmed cases of HCV were diagnosed in Northern Ireland. Sixty seven per cent were HCV PCR positive and 91 per cent have been referred to the specialist HCV clinic in Belfast.
Of the 343 HCV PCR positive cases, 217 referrals for specialist assessment were received without the network’s involvement. Seven patients died before the offer of an HCV clinic appointment.
The network manager has followed up on 126 cases where there did not appear to be any record of a referral being received by the liver clinic in the Royal Victoria Hospital. The first wave of follow-up letters prompted 73 referrals to the clinic, with the second resulted in a further 21.
Learnings
As hepatitis C is not notifiable in Northern Ireland, health protection services are not notified of the diagnosis, so the network coordinator had to go directly back to the referring clinician to encourage referral.
In some cases this was a hospital ward and the clinician was not listed, so further work had to be done to ensure a clinician took responsibility to refer the patient to hepatology.
Follow up of patients diagnosed through GUM was a problem as the results are anonymous and the individuals difficult to identify. The network co-ordinator has to contact the GUM unit by letter, asking them if the patient has been referred to the hepatitis clinic or to a gastroenterologist specialising in viral hepatitis.
Evaluation
Four NHS organisations have asked for copies of the HCV clinician fact sheet, HCV referral guidelines for primary care and the patient information leaflet.
The percentage of cases requiring follow up has dropped from 60 per cent in 2010 to 11 per cent in 2013. From January to June 2014, the MNC manager has had to follow up just four HCV PCR positive cases without referral records.
With the network involvement, 100 per cent of PCR positive cases can be accounted for, allowing early assessment for liver disease. This does not always translate to the number being seen in clinic, however. The next step is to improve on clinic attendance, and a text message reminder service is already being piloted.
