Dear Sir,Confounding causes of liver cancer such as alcohol or hepatitis have been controlled in our long-term prospective hepatocellular carcinoma (HCC) study . The study was based on a well-characterized acute intermittent porphyria (AIP) population in northern Sweden . Hepatitis B and C were rare in this age group in this sparsely populated northern part of Sweden. Hepatitis B and C virus tests were negative in all cases in the HCC study. Almost all subjects were well known by us regarding alcohol habits. No alcohol abuse was present amongst the cases.
The cost-effectiveness of the surveillance was somewhat beyond the scope of this study. As mentioned in our article, the annual incidence of HCC in AIP gene carriers aged >50 years was 0.8%. As a comparison, the annual incidence of breast cancer amongst our general population of women in the same age group is 0.3%. Thus, the number needed to screen is three times higher to find one woman with breast cancer as compared with subjects with AIP and HCC in the mentioned age group. Surveillance programme for breast cancer in women is performed in some countries.
The decision to enter a patient into a surveillance programme is dependent on the risk of HCC, which is related to the incidence of HCC. The increase in longevity is also of importance. Interventions that can be achieved at costs <$50 000 per year of life gained have been considered cost-effective . Surveillance with ultrasonography once a year is the minor cost. The main cost is the treatment of HCC (radiofrequency ablation, surgical resection or, in few cases, liver transplantation). National guidelines for HCC in Sweden, including AIP, are in progress. Surveillance is considered cost-effective, but scientific evaluation is recommended based on empirical data.