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IPIG 2025 | An in-depth interview survey study investigating the treatment burden in patients with PNH
Yasutaka Ueda, MD, PhD, Osaka University, Suita, Japan, discusses the findings of an in-depth interview survey study investigating the treatment burden in patients with paroxysmal nocturnal hemoglobinuria (PNH). The study highlights the significant financial impact of treatment on patients due to frequent visits to the clinic, leading to missed working days. This interview took place at the 2nd International PNH Interest Group (IPIG) Conference in Paris, France.
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Transcript
Yes, we wanted to know what is the most burdensome to a PNH patient, both treated or not treated. And the most interesting thing what we hadn’t expected was that many patients still complain about financial problems because, due to the national program, all those PNH patients treated with very expensive complement inhibitors, the cost is almost, well not perfectly, but almost covered by the government...
Yes, we wanted to know what is the most burdensome to a PNH patient, both treated or not treated. And the most interesting thing what we hadn’t expected was that many patients still complain about financial problems because, due to the national program, all those PNH patients treated with very expensive complement inhibitors, the cost is almost, well not perfectly, but almost covered by the government. So we didn’t think so much about financial costs for the patient, but actually the most, well the top-rated complaints about those PNH patients are about financial problems. It’s not only because of the treatment cost for complement inhibitors, but also because they have to spare money for frequent visits to the hospital or other related issues. Especially because they have to come to the clinic very often. So sometimes they have to take days off. So that’s a big concern.
This interview was, well, first we prepared questionnaires for the patients based on the publication or discussion with PNH experts in Japan. But the interview was a semi-structured questionnaire. It means that we prepared some questions for the patient. But when we interviewed the patient, according to the response from the patient, we asked more deeply about the response from the patient. Then we got feedback from the response from the patient and we modified the question to further deeply understand the real burden of the patient. So this survey was not doctor-oriented but a patient-oriented interview.
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