Perception of the quality of life of families and patients with severe Haemophilia A in prophylactic treatment with Emicizumab or FVIII lyophilisate: Focus group study
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作者:
Gonzalez Ruiz, Lina
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Pontificia Univ Catolica Chile, Santiago, Region Metropol, ChilePontificia Univ Catolica Chile, Santiago, Region Metropol, Chile
Gonzalez Ruiz, Lina
[1
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Zuniga Contreras, Pamela
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Pontificia Univ Catolica Chile, Santiago, Region Metropol, ChilePontificia Univ Catolica Chile, Santiago, Region Metropol, Chile
Zuniga Contreras, Pamela
[1
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Rosas, Amaia
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Pontificia Univ Catolica Chile, Santiago, Region Metropol, ChilePontificia Univ Catolica Chile, Santiago, Region Metropol, Chile
Rosas, Amaia
[1
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Nielsen Guzman, Benjamin
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Pontificia Univ Catolica Chile, Santiago, Region Metropol, ChilePontificia Univ Catolica Chile, Santiago, Region Metropol, Chile
Nielsen Guzman, Benjamin
[1
]
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[1] Pontificia Univ Catolica Chile, Santiago, Region Metropol, Chile
Haemophilia patients must face challenges that impact their quality of life;
There are no quality-of-life scales for patients receiving new therapies;
When receiving treatment with Emicizumab they have a common experience of 'new normal life';
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Sheba Med Ctr, Natl Hemophilia Ctr & Thrombosis Unit, Tel Hashomer, Israel
Sheba Med Ctr, Amalia Biron Res Inst Thrombosis & Hemostasis, Tel Hashomer, Israel
Tel Aviv Univ, Tel Aviv, IsraelSheba Med Ctr, Natl Hemophilia Ctr & Thrombosis Unit, Tel Hashomer, Israel
Kenet, G.
Chen, Y-C
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Triserv Gen Hosp, Haemophilia Care & Res Ctr, Taipei, TaiwanSheba Med Ctr, Natl Hemophilia Ctr & Thrombosis Unit, Tel Hashomer, Israel
Chen, Y-C
Lowe, G.
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Queen Elizabeth Hosp, West Midlands Comprehens Care Haemophilia Ctr, Birmingham, W Midlands, EnglandSheba Med Ctr, Natl Hemophilia Ctr & Thrombosis Unit, Tel Hashomer, Israel
Lowe, G.
Percy, C.
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Queen Elizabeth Hosp, West Midlands Comprehens Care Haemophilia Ctr, Birmingham, W Midlands, EnglandSheba Med Ctr, Natl Hemophilia Ctr & Thrombosis Unit, Tel Hashomer, Israel
Percy, C.
Tran, H.
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Alfred Hosp, Haemostasis & Thrombosis Unit, Haemophilia Treatment Ctr, Melbourne, Vic, AustraliaSheba Med Ctr, Natl Hemophilia Ctr & Thrombosis Unit, Tel Hashomer, Israel
Tran, H.
von Drygalski, A.
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Scripps Res Inst, Dept Mol Med, La Jolla, CA 92037 USASheba Med Ctr, Natl Hemophilia Ctr & Thrombosis Unit, Tel Hashomer, Israel
von Drygalski, A.
Trossaert, M.
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CHU Nantes, Ctr Reg Traitement Hemophiles, Nantes, FranceSheba Med Ctr, Natl Hemophilia Ctr & Thrombosis Unit, Tel Hashomer, Israel
Trossaert, M.
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Reding, M.
Oldenburg, J.
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Univ Hosp Bonn, Inst Expt Haematol & Transfus Med, Bonn, Germany
Univ Hosp Bonn, Ctr Rare Dis, Bonn, GermanySheba Med Ctr, Natl Hemophilia Ctr & Thrombosis Unit, Tel Hashomer, Israel
Oldenburg, J.
Mingot Castellano, M.
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Reg Univ Hosp, Malaga, SpainSheba Med Ctr, Natl Hemophilia Ctr & Thrombosis Unit, Tel Hashomer, Israel
Mingot Castellano, M.
Park, Y. S.
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Kyung Hee Univ Hosp Gangdong, Seoul, South KoreaSheba Med Ctr, Natl Hemophilia Ctr & Thrombosis Unit, Tel Hashomer, Israel
Park, Y. S.
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Peyvandi, F.
Quinn, J.
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BioMarin Pharmaceut Inc, Novato, CA USASheba Med Ctr, Natl Hemophilia Ctr & Thrombosis Unit, Tel Hashomer, Israel
Quinn, J.
Mitchell, N.
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BioMarin Pharmaceut Inc, Novato, CA USASheba Med Ctr, Natl Hemophilia Ctr & Thrombosis Unit, Tel Hashomer, Israel
Mitchell, N.
Huang, M.
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BioMarin Pharmaceut Inc, Novato, CA USASheba Med Ctr, Natl Hemophilia Ctr & Thrombosis Unit, Tel Hashomer, Israel
Huang, M.
Kim, B.
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BioMarin Pharmaceut Inc, Novato, CA USASheba Med Ctr, Natl Hemophilia Ctr & Thrombosis Unit, Tel Hashomer, Israel
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Sophiahemmet Univ, Dept Nursing Sci, Box 5605, S-11486 Stockholm, SwedenSophiahemmet Univ, Dept Nursing Sci, Box 5605, S-11486 Stockholm, Sweden
Axelsson, Lena
Benzein, Eva
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Linnaeus Univ, Fac Hlth & Life Sci, Ctr Collaborat Palliat Care, Kalmar, SwedenSophiahemmet Univ, Dept Nursing Sci, Box 5605, S-11486 Stockholm, Sweden
Benzein, Eva
Lindberg, Jenny
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Lund Univ, Dept Clin Sci, Unit Med Eth, Fac Med, Lund, Sweden
Skane Univ Hosp, Dept Nephrol, Malmo, SwedenSophiahemmet Univ, Dept Nursing Sci, Box 5605, S-11486 Stockholm, Sweden
Lindberg, Jenny
Persson, Carina
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Linnaeus Univ, Fac Hlth & Life Sci, Ctr Collaborat Palliat Care, Kalmar, SwedenSophiahemmet Univ, Dept Nursing Sci, Box 5605, S-11486 Stockholm, Sweden