THE VALUE OF COST-EFFECTIVENESS INFORMATION FOR THE DECISION ON GENETIC SCREENING FOR HAEMOCHROMATOSIS IN GERMANY

Objectives: It has been recommended that due to a lack of clinical evidence of sufficient quality, screening for hereditary haemochromatosis (HH) should not be adopted at the present time and that instead, further research is warranted.  This study builds on a published decision-analytic model in order to determine the potential value of further research.  The underlying model calculates the incremental cost-effectiveness ratio (ICER) of cascade testing of male relatives of HH patients to be approximately 40,000 Euros per life-year gained (EUR/LYG); the most cost-effective strategy for male population screening is associated with an ICER of approximately 120,000 EUR/LYG.

Methods: Expected value of perfect information (EVPI) is calculated for the decision and for individual parameters as well as groups of parameters.  Population EVPI was based on an infinite time horizon for the target cohort of 30 years old male Germans. 

Results: At a willingness to pay (WTP) of 50,000 EUR/LYG, the total expected value of perfect information was calculated to be approximately 500,000 EUR in the German health care system (approximately 2 million for a WTP of 100,000 EUR/LYG).  Among individual parameters, uncertainty about the probability of cirrhosis in homozygotes, about the age at cirrhosis and about patient adherence to preventive phlebotomy had the highest expected value of approximately 7,000; 4,000; and 3,000 EUR, respectively (600,000; 400,000; and 700,000, respectively for a WTP of 100,000 EUR/LYG).  Among different groups of parameters, those that could be informed by a long-term observational study had the highest joint EVPI with a value of approximately 200,000 EUR (1.6 million for a WTP of 100,000 EUR/LYG).

Conclusions: Value of information analysis demonstrates that the overall costs of decision uncertainty are comparatively low. From a decision-analytic point of view with a WTP of 50,000 EUR/LYG there appears little value in further research to substantiate the decision not to screen for HH in the male German population.  Apart from uncertainty about the manifestation of cirrhosis, the expected value of partial perfect information is highest for adherence to preventive therapies.  Given the scarce evidence on the long-term impact of genetic information on patient behaviour, future studies on genetics in healthcare should therefore consider including this parameter.