Behind the scenes at SHM: Dr. Colette Smit talks about collecting data on hepatits co-infection
Dr. Colette Smit is a senior researcher in the analysis group at Stichting HIV Monitoring (SHM). Her work focuses primarily on the analysis of hepatitis B and C co-infection, but also covers pregnant women and children with HIV. In this interview, Colette talks about the hepatitis co-infections in HIV and the importance of studying and collecting data on hepatitis B and C.
Why is it important to study hepatitis co-infection in HIV patients?
If you look at the percentage of people with hepatitis B or C infection, you find that it is higher in people with HIV. This is because hepatitis and HIV often share the same route of transmission. About 5% of people with HIV have a chronic hepatitis C infection, and around 8% have a chronic hepatitis B infection. So the proportion of HIV-infected people with hepatitis co-infection is quite large. Hepatitis B and C increase the risk of liver disease: liver fibrosis can develop into liver cirrhosis and eventually even into hepatocellular carcinoma. Now that treatment for people with HIV is more effective, AIDS-related deaths have dropped and people are living longer. As a result, the effects of hepatitis B and C infection are becoming increasingly visible in people living with HIV, and hepatitis B and C co-infection are becoming an increasingly important cause of morbidity and mortality in this group.
SHM and the Dutch Association of HIV-Treating Physicians (Nederlandse vereniging van HIV-behandelaren (NVHB)) set up a joint hepatitis working group. Why was this done and what was your role within the SHM-NVHB working group?
We set up this working group together with the NVHB in 2010. At the time, SHM was already collecting data on hepatitis B and C, but these data were too limited to really be able to carry out detailed research. The working group came together several times and developed a protocol for more extensive collection of hepatitis B and C data. Within the working group, I was the bridge between the treating physicians and the SHM staff responsible for developing the data input screens and for the data collection. The new protocol meant that SHM was able to collect far more comprehensive information on hepatitis B and hepatitis C co-infection.
Which data do you collect now?
We now collect the whole spectrum of information relating to hepatitis B and C. For example, information about the diagnostic work-up, treatment, response to treatment, but also complications that might be caused by hepatitis B or C. In terms of these complications, we collect the information from fibroscans, pathology reports, radiology results, endoscopy examinations, etc. This means that we now have very detailed data to properly chart the incidence and prevalence of liver disease in people living with HIV. It also means that, as the new hepatitis C therapies increase treatment options, we also have the data to monitor the effect of these therapies.
How does SHM collect the data?
We have a group of data collectors who have been specially trained to collect hepatitis data. They have an excellent understanding and extensive knowledge of issues like the pathology reports, radiology results, etc. This means that they can extract all the necessary information from the reports. After we selected all the patients in the database with an active hepatitis C infection or active hepatitis B infection, the data collectors visited all the HIV treatment centres and, using the protocol drawn up by the hepatitis working group, collected all the necessary information. This has enabled us to chart the entire infection in these patients.
How many years back did you have to go?
We collected anonymous data from people with HIV and a hepatitis infection from the moment the patient was registered as being in care with an HIV infection. This meant that for some patients, medical records had to be called up from the early 1990s and, in some cases, even the 1980s. Retrieving all this historical data was quite a job for the data collectors, but through their perseverance we now have a comprehensive overview.
What stage are you at now?
Last summer we completed the hepatitis C collection. We then started with the group of patients with active hepatitis B infection and finished this in June this year. So we’ve now done all the retrospective work and both groups are now complete. However, since the patients’ care is ongoing, hepatitis B and C data collection has become part of the ongoing data collection, just as for the HIV data collection.
Will SHM continue to collect these data with the advent of the new hepatitis C drugs?
Certainly. We have a good historical overview and, by continuing to collect these data, we can follow new trends and developments and monitor the effect of these new drugs in people with HIV and hepatitis C co-infection. So we will definitely carry on with it.