Bibliographic Details
| Title: |
Patient perspective on living with mild hemophilia in Germany: results from a nationwide survey |
| Authors: |
Rosa Sonja Alesci, Georg Goldmann, Susan Halimeh, Katharina Holstein, Christoph Königs, Wolfgang Miesbach, Christian Pfrepper, Martin Olivieri |
| Source: |
Frontiers in Medicine, Vol 11 (2024) |
| Publisher Information: |
Frontiers Media S.A., 2024. |
| Publication Year: |
2024 |
| Collection: |
LCC:Medicine (General) |
| Subject Terms: |
mild hemophilia, hemophilia A, hemophilia B, care reality, joint bleeding, quality of life, Medicine (General), R5-920 |
| More Details: |
IntroductionThe disease burden and bleeding risk of patients with mild hemophilia may be underestimated. Their health-related quality of life (QoL) may be negatively impacted by insufficient treatment and bleed-related joint damage connected to a potentially delayed diagnosis.AimThis study aims to gain information on the care reality and QoL of patients aged ≥12 years with mild hemophilia in Germany.MethodsAn anonymous cross-sectional patient survey using standardized questionnaires was conducted in a validated electronic patient-reported outcome system. Medical specialists, hemophilia centers, patient organizations, and support groups across Germany invited the patients.ResultsA total of 43 patients (35 patients with hemophilia A, 5 patients with hemophilia B, and 3 patients for whom the information was missing) with a median age of 33 years were analyzed. The median age at diagnosis was 6.0 years (interquartile range [IQR] 2.0–15.0), and the median factor activity was 14.0% (IQR 12.0–25.0). Nearly 85% of the patients received factor concentrates in the past, and the most common reasons for the treatment were surgery or joint bleeding (each 65.6%). Half of the patients who provided feedback experienced complications during bleeding episodes. Prophylactic treatment with factor concentrates was rare (10.3%). The patients had minor problems regarding their health status.ConclusionBleeding complications and joint bleeding, in particular, may be highly underestimated in patients with mild hemophilia, highlighting a medical need in this population. Patients with a potential benefit from prophylaxis need to be identified. Mild hemophilia has a negative impact on patients’ QoL. Hemophilia centers satisfied the patients’ needs. Further research is needed to address the current lack of awareness and improve adequate treatment in the future. |
| Document Type: |
article |
| File Description: |
electronic resource |
| Language: |
English |
| ISSN: |
2296-858X |
| Relation: |
https://www.frontiersin.org/articles/10.3389/fmed.2024.1347024/full; https://doaj.org/toc/2296-858X |
| DOI: |
10.3389/fmed.2024.1347024 |
| Access URL: |
https://doaj.org/article/19f8d462bcaa46e585eedb6913bcf9bd |
| Accession Number: |
edsdoj.19f8d462bcaa46e585eedb6913bcf9bd |
| Database: |
Directory of Open Access Journals |
