Titre
Swiss Survey on current practices and opinions on clinical constellations triggering the search for PNH clones.
Type
article
Institution
UNIL/CHUV/Unisanté + institutions partenaires
Périodique
Auteur(s)
Rovó, A.
Auteure/Auteur
Gavillet, M.
Auteure/Auteur
Drexler, B.
Auteure/Auteur
Keller, P.
Auteure/Auteur
Schneider, J.S.
Auteure/Auteur
Colucci, G.
Auteure/Auteur
Beauverd, Y.
Auteure/Auteur
van Dorland, H.A.
Auteure/Auteur
Pollak, M.
Auteure/Auteur
Schmidt, A.
Auteure/Auteur
De Gottardi, A.
Auteure/Auteur
Bissig, M.
Auteure/Auteur
Lehmann, T.
Auteure/Auteur
Duchosal, M.A.
Auteure/Auteur
Zeerleder, S.
Auteure/Auteur
Liens vers les personnes
Liens vers les unités
ISSN
2296-858X
Statut éditorial
Publié
Date de publication
2023-07
Volume
10
Première page
1200431
Peer-reviewed
Oui
Langue
anglais
Notes
Publication types: Journal Article
Publication Status: epublish
Publication Status: epublish
Résumé
This national survey investigated the current practice in Switzerland by collecting participants' opinions on paroxysmal nocturnal hemoglobinuria (PNH) clone assessment and clinical practice.
This study aimed to investigate clinical indications prompting PNH clones' assessment and physician's accessibility of a flow cytometry facility, and also to understand clinical attitudes on the follow-up (FU) of patients with PNH clones.
The survey includes 16 multiple-choice questions related to PNH and targets physicians with a definite level of experience in the topic using two screener questions. Opinion on clinical management was collected using hypothetical clinical situations. Each participant had the option of being contacted to further discuss the survey results. This was an online survey, and 264 physicians were contacted through email once a week for 5 weeks from September 2020.
In total, 64 physicians (24.2%) from 23 institutions participated (81.3% hematologists and 67.2% from university hospitals). All had access to flow cytometry for PNH clone testing, with 76.6% having access within their own institution. The main reasons to assess for PNH clones were unexplained thrombosis and/or hemolysis, and/or aplastic anemia (AA). Patients in FU for PNH clones were more likely to be aplastic anemia (AA) and symptomatic PNH. In total, 61% of the participants investigated PNH clones repetitively during FU in AA/myelodysplastic syndromes patients, even when there was no PNH clone found at diagnosis, and 75% of the participants tested at least once a year during FU. Opinions related to clinical management were scattered.
The need to adhere to guidelines for the assessment, interpretation, and reporting of PNH clones emerges as the most important finding, as well as consensus for the management of less well-defined clinical situations. Even though there are several international guidelines, clear information addressing specific topics such as the type of anticoagulant to use and its duration, as well as the indication for treatment with complement inhibitors in some borderline situations are needed. The analysis and the discussion of this survey provide the basis for understanding the unmet needs of PNH clone assessment and clinical practice in Switzerland.
This study aimed to investigate clinical indications prompting PNH clones' assessment and physician's accessibility of a flow cytometry facility, and also to understand clinical attitudes on the follow-up (FU) of patients with PNH clones.
The survey includes 16 multiple-choice questions related to PNH and targets physicians with a definite level of experience in the topic using two screener questions. Opinion on clinical management was collected using hypothetical clinical situations. Each participant had the option of being contacted to further discuss the survey results. This was an online survey, and 264 physicians were contacted through email once a week for 5 weeks from September 2020.
In total, 64 physicians (24.2%) from 23 institutions participated (81.3% hematologists and 67.2% from university hospitals). All had access to flow cytometry for PNH clone testing, with 76.6% having access within their own institution. The main reasons to assess for PNH clones were unexplained thrombosis and/or hemolysis, and/or aplastic anemia (AA). Patients in FU for PNH clones were more likely to be aplastic anemia (AA) and symptomatic PNH. In total, 61% of the participants investigated PNH clones repetitively during FU in AA/myelodysplastic syndromes patients, even when there was no PNH clone found at diagnosis, and 75% of the participants tested at least once a year during FU. Opinions related to clinical management were scattered.
The need to adhere to guidelines for the assessment, interpretation, and reporting of PNH clones emerges as the most important finding, as well as consensus for the management of less well-defined clinical situations. Even though there are several international guidelines, clear information addressing specific topics such as the type of anticoagulant to use and its duration, as well as the indication for treatment with complement inhibitors in some borderline situations are needed. The analysis and the discussion of this survey provide the basis for understanding the unmet needs of PNH clone assessment and clinical practice in Switzerland.
PID Serval
serval:BIB_5D613402B376
PMID
Open Access
Oui
Date de création
2023-08-14T13:52:25.921Z
Date de création dans IRIS
2025-05-20T17:05:45Z
Fichier(s)![Vignette d'image]()
En cours de chargement...
Nom
37564039_BIB_5D613402B376.pdf
Version du manuscrit
published
Licence
https://creativecommons.org/licenses/by/4.0
Taille
693.08 KB
Format
Adobe PDF
PID Serval
serval:BIB_5D613402B376.P001
URN
urn:nbn:ch:serval-BIB_5D613402B3768
Somme de contrôle
(MD5):6d34119e905d2458560eba947d6e4860