We are a federally recognized hemophilia treatment center, treating all rare blood disorders to include hemophilia, VWD, sickle cell disease, and thrombosis across the lifespan (peds + adults). We are looking for standardized approach to evaluate HRQoL in all our patients. Do you recommend a certain tool? Are disease specific tools better for hemophilia? Is the SF-36v2 too generic for our rare disease populations? Is the EQ-5D-3L robust enough to use alone, or must it be used in combo with other measures? Any insight is appreciated.
My two cents...
Any tool will do. Choice will depend on what data you have. Although there are strong voices favoring disease-specific over generic tools, I personally prefer generic. One important purpose of any HRQOL (or disease burden) estimation is to put it in perspective, such as how does the HR-QOL estimates in a population of people with hemophilia compares to people living with other similar chronic conditions. Disease-specific tools obviously do not allow direct comparisons across different diseases.
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