The NHHRP was initiated to retrieve chronic HBV and HCV patients without follow-up in primary or specialist care. We aimed to identify these patients and invite them for re-evaluation at our clinic.
The number of patients eligible for retrieval for both HBV and HCV was considerably lower than the total number of patients lost to follow-up. The major reason for this drawback was that updated contact details were lacking. About one-third of those identified to lost to follow-up moved to another region and may have received adequate follow-up and care elsewhere. Due to national privacy regulations we were not allowed to search for updated data outside our own medical records, such as municipal databases. We expect this privacy regulation to be a major limitation in future retrieval projects. However, in Iceland, chronic HCV was defined as a public health threat and therefore a nationwide elimination programme, treatment as prevention for hepatitis C in Iceland (TRAP HEP C), was launched. Unlike our approach, in the context of this TRAP HEP C programme it was allowed to check updated contact details in the municipal database and to contact the patient directly .
Among the patients not eligible for retrieval we identified two important groups. The first group consisted of asylum seekers whose tests were performed in asylum seeker centers upon arrival. At the time of our retrieval project current address and legal status were unknown and therefore we were not able to retrieve and re-evaluate this group. Our numbers suggest that this group could be a significant target group for retrieval and with better information and cooperation between asylum seeker centers and hepatitis treatment centers we could offer this group a chance of control or cure of their disease.
Second, prisoners tested positive during detention period are lost to follow-up after transferal to other detention centers or release to freedom without organizing follow-up in their place of residence. With close cooperation between prisons and hepatological centers this group is especially suitable for further evaluation and treatment of their chronic HBV or HCV. A large state-wide programme in Australia showed that screening and treatment of prisoners can be very successful if it is done in a structured approach . However, reimbursement of diagnostics and therapy within the detention period differs per country and could be a challenge.
Only 44% of chronic HBV patients eligible for retrieval was referred for re-evaluation. A lack of awareness of both patients and primary health care physician is a possible explanation. Awareness about chronic HBV and HCV can be created through education or media campaign. Increased awareness will contribute to the effect of a retrieval programme and may enhance the willingness of target groups to participate in these programmes.
The major change of management in chronic HBV patients was strict surveillance of the patient and to a lesser extent indication for antiviral therapy. Evaluation resulted in a major change of management in 44% of the patients. The remaining 50% had an indication for 6-12 monthly check of ALT levels and viral load. Patients were evaluated using the 2012 Dutch guideline on chronic HBV infection as standard. In 2017 the European Association of Studies of the Liver (EASL) released the updated guideline on HBV infection. This guideline sets a stricter cut-off point for indications for treatment with all patients with HBeAg-positive or –negative chronic hepatitis B, a viral load of > 2.0 • 103 in combination with ALT greater than the upper limit of normal and/or at least moderate liver necroinflammation or fibrosis should be treated.
Three HBV patients started antiviral therapy based on viral loads in combination with elevated ALT levels. An additional 5 patients had an indication for strict follow-up because of elevated ALT levels or fibrosis stage F2-F3 despite viral load < 2,0 • 104. These patients now may have an indication for therapy if HBV DNA levels are > 2,0 • 103 according to the updated EASL guideline .
Concerning HCV patients, the results of retrieval were disappointing. We observed that two-third of patients had treatment or adequate follow-up, but the remaining one-third was hard to retrieve due to above-mentioned reasons. Moreover, people who inject drugs (PWID) are an important target group as well. Because this group often has no permanent address, it is especially hard to reach them. However, treatment of PWID can be successfully in a multidisciplinary setting using strategies such as directly observed therapy and the involvement of nurse-practioners . In close cooperation with addiction centers this group is particularly suitable for structured screening and therapy, for instance in conjunction with opioid substation therapy.
Despite difficulties with reaching above mentioned target groups, the effect of retrieval of chronic HCV patients will be significant. As of October 2015 direct antiviral agents for hepatitis C are approved for reimbursement of every basic health insurance in the Netherlands. Therefore, according to the Dutch guideline on hepatitis C, every patient with HCV infection has an indication for antiviral therapy. We started antiviral therapy in 3 of 4 patients, in one patient we did not start because of limited life expectancy.
A considerable larger number of HBV patients was lost to follow-up compared to HCV patients. The population of HBV patients predominantly consisted of migrants whereas the HCV population mainly consisted of PWID. It is possible that migrants have more difficulties with access to health care whilst PWID often have follow-up in addiction care and are easily referred to health care. Furthermore, in the past need for treatment and follow-up for chronic HBV infection was less strict compared to HCV patients and HBV patients therefore easily got lost to follow-up.
The most time-consuming element was the complicated construction to contact patients via their primary health care physician. Our region is a low-endemic region for HBV and HCV and most practices only have one or two HBV or HCV patients. Therefore, viral hepatitis is not a priority to most primary health care physicians. If it would be possible to approach the patients directly by using updated contact details, a retrieval project could be much more effective to perform. But we expect that, due to (inter) national privacy regulations, a direct approach will be hard to implement.
Our retrieval project is currently expanded to other regions in the Netherlands. The results of these projects will show us if large scale retrieval projects are worth the effort.