Further publication on the questionnaire quality of life of AA / PNH patients

The Aachen University Clinic has completed phase III of the project “Health-related quality of life of patients with paroxysmal nocturnal haemoglobinuria and / or aplastic anaemia”, which is supported by our association. The aim of the project is the creation of an AA/PNH-specific questionnaire (QLQ-AA/PNH) in order to better understand and respond to the quality of life of patients and their special needs. So far, in addition to a special fatigue questionnaire, one from oncology has been used, which by no means covers all aspects of the AA/PNH problem.


In the first two phases of the study, the items that are important for those affected were determined in interviews; some patients will still remember the conversations with Ms Groth and Ms Niedeggen well. In the third phase, a group of experts from the study evaluated the importance of each individual item for the respondents. Some questions were then deleted, changed or expanded so that the questionnaire now consists of 54 items. It is available in German, English, French and Italian.


In the following phase IV of the study, the so-called psychometric validation takes place, which is intended to confirm the objectivity and reliability of the questionnaire. Since the diseases are very rare and as a result there are only a relatively small number of patients, the questionnaire can already be used now. It is used in the EMAA study and may be used in trials and clinical studies.


We would like to thank the team at the Aachen University Clinic (RWTH) for their great commitment, in particular Dr Groth, Ms Niedeggen and Dr Panse and we are very pleased that we were able to contribute to the success of this important project with our financial support.


The published article is available at the following link: