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IPIG 2025 | Investigating the relationship between hemoglobin, fatigue & quality of life in patients with PNH
Jens Panse, MD, Aachen University Hospital, Aachen, Germany, shares findings from a real-world survey exploring the association between hemoglobin levels, fatigue, and quality of life in patients with paroxysmal nocturnal hemoglobinuria (PNH). While it used to be that fatigue and hemoglobin levels were thought to be unrelated in this patient population, recent evidence suggests that higher hemoglobin levels are generally associated with less fatigue and improved quality of life. However, Dr Panse notes that this type of study has limitations, and further research is needed to confirm findings. This interview took place at the 2nd International PNH Interest Group (IPIG) Conference in Paris, France.
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Transcript
So the finding basically is, while at times when we could not increase hemoglobin levels to normal values, we always thought that hemoglobin levels and fatigue are not necessarily associated. But nowadays, that we know that hemoglobin levels can increase close to normal levels or even above normal, we realize that the better the hemoglobin level, the better the level of fatigue is...
So the finding basically is, while at times when we could not increase hemoglobin levels to normal values, we always thought that hemoglobin levels and fatigue are not necessarily associated. But nowadays, that we know that hemoglobin levels can increase close to normal levels or even above normal, we realize that the better the hemoglobin level, the better the level of fatigue is. So the lesser the level of fatigue. Having said that, it is important to notice that there are also patients who have high hemoglobin and are still fatigued. This is not a study in terms of a trial, but rather a survey, and this, of course, always has a bias because people participating within surveys. Nonetheless, it shows you that it is quite achievable to have higher hemoglobin levels because then you’re less fatigued and your quality of life is better.
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Disclosures
Consulting fees: Alexion, Sobi, Omeros, Sandoz; Payment or honoraria for lectures, presentations, speakers bureaus, manuscript writing or educational events: Alexion, Amgen, Apellis, AstraZeneca, Blueprint Medicines, BMS, Boehringer Ingelheim, Gilead, MSD, Novartis, Pfizer, Roche, Sanofi, Sobi; Support for attending meetings and/or travel: Alexion, Blueprint Medicines, Boehringer Ingelheim, Novartis, Omeros, Pfizer, Roche, Sobi; Participation on a Data Safety Monitoring Board or Advisory Board: Alexion, Amgen, Apellis, AstraZeneca, Blueprint Medicines, BMS, Boehringer Ingelheim, Gilead, MSD, Novartis, Omeros, Pfizer, Roche, Sanofi, Sobi; Leadership or fiduciary role in other board, society, committee or advocacy group, paid or unpaid: www.lichterzellen.de; Receipt of equipment, materials, drugs, medical writing, gifts or other services: Apellis, Blueprint Medicines, Novartis, Roche, Sobi.
