Deriving reference values and utilities for the QoL-AGHDA in adult GHD

BACKGROUND: Quality of life (QoL) measures are important in growth hormone (GH) deficiency (GHD) in adults. Ideally, for use in health economics, QoL should be expressed in utilities. The aim of this study was to obtain reference values and utilities for QoL of GHD in adults in Belgium and the Netherlands. METHODS: The study was conducted in three stages: (1) The Quality of Life-Assessment for Growth Hormone Deficiency in Adults (QoL-AGHDA) and the EQ-5D were administered in a representative sample of 6,875 individuals from the Belgian and 1,400 individuals from the general Dutch population. The EQ-5D(index) can be used to estimate utilities. Using a regression, utilities were predicted from the QoL-AGHDA. (2) QoL-AGHDA scores were obtained from 299 Belgian and 234 Dutch adult patients with GHD and no GH replacement. These scores were converted to utilities and compared the burden of disease with other patient groups. (3) To test the criterion validity, the ‘standard’ EQ-5D(index) was used in a subsample of 64 Dutch GHD patients and compared with the predicted utilities. RESULTS: We obtained data from 1,026 Belgian (response rate = 15%) and 1,038 Dutch respondents (response rate = 74%). The Belgian mean QoL-AGHDA value was 6.95 (90% range = 14.00), and the Dutch mean was 5.48 (range = 13.00). The R (2) of the regression model to predict the EQ-5D(index) was 0.360 (Belgium) and 0.482 (the Netherlands). We demonstrated a considerable burden of disease in GHD patients, comparable to patients with hypertension or with type II diabetes. The criterion validity was 0.407 (intraclass correlation, ICC). CONCLUSIONS: Interventions in GHD can now be evaluated more validly in Belgium and the Netherlands.