The PNH Global Alliance is committed to ensuring that the quality of life of patients is measured as accurately as possible in trials, patient registries and other studies. It is not self-evident that higher blood values (e.g. hemoglobin) lead to less fatigue and the ability to concentrate better; this must be demonstrated with a sophisticated measuring instrument, such as the QLQ-AA/PNH 54. A report about this instrument has been created: Design and development of a disease specific quality of life tool for PNH patients. Read the document here.
Patient representative Pascale Burmester from Germany was interviewed by Dr Jens Panse about the meaning of the AA and PNH specific Quality of Life Questionnaire (QLQ -AA/PNH 54). Watch the video of the interview for more information! Subtitles are available in different languages. Please select a language in the settings of the video.