Abstract
Background
Disease-specific registries, documenting costs and probabilities from pharmacoeconomic studies along with health state utility values from quality-of-life studies could serve as a resource to guide researchers in evaluating the published literature and in the conduct of future economic evaluations for their own research. Registries cataloging economic evaluations currently exist, however they are restricted by the type of economic evaluations they include. There is a need for intervention-specific registries, that document all types of complete and partial economic evaluations and auxiliary information such as quality of life studies. The objective of this study is to describe the development of a pharmacoeconomic registry and provide best practices using an example of hormonal contraceptives.
Methods
An expert panel consisting of researchers with expertise in pharmacoeconomics and outcomes research was convened and the clinical focus of the registry was finalized after extensive discussion. A list of key continuous, categorical and descriptive variables was developed to capture all relevant data with each variable defined in a data dictionary. A web-based data collection tool was designed to capture and store the resulting metadata. A keyword based search strategy was developed to retrieve the published sources of literature. Finally, articles were screened for relevancy and data was extracted to populate the registry. Expert opinions were taken from the panel at each stage to arrive at consensus and ensure validity of the registry.
Results
The registry focused on economic evaluation literature of hormonal contraceptives used for contraception. The registry consisted of 65 articles comprising of 22 cost-effectiveness analyses, 9 cost-utility analyses, 7 cost-benefit analyses, 1 cost-minimization, 14 cost analyses, 10 cost of illness studies and 2 quality of life studies. The best practices followed in the development of the registry were summarized as recommendations. The completed registry, data dictionary and associated data files can be accessed in the supplementary information files.
Conclusion
This registry is a comprehensive database of economic evaluations, including costs, clinical probabilities and health-state utility estimates. The collated data captured from published information in this registry can be used to identify trends in the literature, conduct systematic reviews and meta-analysis and develop novel pharmacoeconomic models.
Health state utility values in people living with HTLV-1 and in patients with HAM/TSP: The impact of a neglected disease on the quality of life
