Healthcare costs are constantly rising all over the world and healthcare technologies that can reduce costs and enhance health outcomes can potentially provide a solution to this global problem. Health outcomes research is performed nationally and internationally to evaluate the outcomes of new health interventions, technologies, and pharmaceuticals along with their cost and burden for society. Comparing the positive or negative effects of health technologies and medications is important for healthcare policy making and reimbursement strategies. One of the important methods to evaluate health outcomes is measurement of health related quality of life. Health Related Quality of Life (HRQoL) is a concept that has important uses in research and comprehensive care of patients with chronic illnesses. HRQoL can be measured by using a classification system consisting of a set of attributes with multiple levels per attribute. One approach to evaluate HRQoL uses questionnaires which derive preference-based measures of health utility, based on a measurement system that allows patients to describe impacts on their health and assigns a utility score between 0 (death) and 1 (perfect health) to those descriptions. These questionnaires are called Multi Attribute Utility Instruments (MAUIs) and are the most widely used method to measure health utilities. HRQoL can be measured with generic or disease-specific instruments. Generic instruments are those that are broadly applicable across types and severities of disease, across different health interventions, and across demographic and cultural subgroups. They are designed to summarize all concepts of HRQoL that apply to many different impairments, illnesses, patients and populations. Disease-specific measures are those that are designed to assess specific diagnostic groups or patient populations. These measures are particularly useful when there they are focused on clinically important changes. It has been argued that generic instruments are insensitive to the health burdens imposed by hemophilia, and to precisely measure HRQoL of patients with a specific disease, we should use a targeted or a disease-specific instrument. Disease-specific HRQoL utility assessments can be used for conducting Cost Utility Analysis (CUA) to allocate resources amongst patients with the same disease. On the other hand, in order to run CUA studies for resource allocation purposes across different diseases, we are dependent on generic utility measures. The purpose of this study was to determine if a generic HRQoL assessment provides relevant utility values in hemophilia patients. We measured HRQoL of hemophilia patients using the EQ-5D-5L (a generic MAUI) and Haemo-QoL-A (a disease –specific descriptive health profile). Significant correlations were found between the utility scores measured by the generic tool EQ-5D-5L and the HRQoL scores measured by Haemo QoL A. Overall, the association between Haemo-QoL-A and EQ-5D-5L was stronger between the total scores as opposed to the domain scores. Associations with Haemo-QoL-A were strongest with the EQ-5D-5L utility scores that were generated using the direct conversion method as opposed to cross-walk valuations based on the extension of the older 3-level EQ-5D-3L utility scores. It can be concluded that the utility scores associated with EQ-5D-5L are sufficiently correlated (correlation coefficient equal or greater than 0.7) with the HRQoL scores and thus, EQ-5D-5L can be used in hemophilia patient population for calculating the utilities required for resource allocation purposes.
University of Minnesota Ph.D. dissertation.June 2019. Major: Social and Administrative Pharmacy. Advisor: Jon Schommer. 1 computer file (PDF); ix, 74 pages.
A Comparison of Generic and Disease-Specific Health-Related Quality of Life Measures in Hemophilia Patients: An Online Study.
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