Chronic hepatitis B data collection: new project
As a result of the new hepatitis B and C data collection protocol drawn up by the hepatitis working group, all data from registered HIV patients with a chronic hepatitis B co-infection have been checked and supplemented with additional information. A specially trained team of Stichting HIV Monitoring data collectors collected all the data for the entire patient group within just six months. These more extensive data will provide greater insight into the course and treatment of hepatitis B co-infections in HIV-infected individuals.
From the outset, Stichting HIV Monitoring (SHM) has registered hepatitis B (HBV) and hepatitis C (HCV) co-infections in the SHM database. However, to properly map all liver-related comorbidity, collection of more extensive data was necessary. To this end, the hepatitis working group, a collaboration between the Dutch Association of HIV Treating Physicians and SHM, was set up in 2010 to develop a protocol for more detailed collection of hepatitis B and C data.
This new protocol made it possible to start checking the completeness of data in the database for all HIV-infected persons with a chronic HBV co-infection (a similar project had already been completed in 2012 for HCV). For both patient groups, data collection was expanded through the additional registration of retrospective hepatitis A results, as well as all information from imaging techniques and pathology reports. In addition, the vaccination status of all patients was recorded and careful attention was paid to noting the medication prescribed to treat the HBV infection. Finally, any changes to the cART regimen to allow treatment of the hepatitis B virus were also noted.
The collection of all this information was quite a task. Specially trained data collectors from SHM were sent to various treatment centres to check and complete the data. This required help from the data collectors and HIV nurse consultants at the treatment centres, for example to arrange a desk at the hospital, to set up a temporary account to use a computer, and to track down old records (in some cases from other locations). Sifting through these paper records, which could comprise up to 500 pages, was a time-consuming business. It is therefore quite an achievement that the data collection team managed to collect all the data for the entire patient group within a period of 6 months.
In recent years, there have been a number of additions to the hepatitis B data collected. For example, the hepatitis B viral load is now almost always recorded, liver diagnostic data have increased through the use of new imaging techniques such as fibroscans, and there is far more focus on the patient’s vaccination status. All these additions will provide far greater insight into the course and treatment of HBV and HCV co-infections in HIV-infected individuals.