Moving towards Normalization of haemostasis and health equity:
Evolving treatment goals for haemophilia A

J 2024

Moving towards Normalization of haemostasis and health equity: Evolving treatment goals for haemophilia A

HOLME, Pal Andre; Jan BLATNÝ; Pratima CHOWDARY; Riitta LASSILA; Niamh O'CONNELL et al.

Základní údaje

Originální název

Moving towards Normalization of haemostasis and health equity: Evolving treatment goals for haemophilia A

Autoři

HOLME, Pal Andre; Jan BLATNÝ; Pratima CHOWDARY; Riitta LASSILA; Niamh O'CONNELL; Cedric HERMANS; Maria Teresa Alvarez ROMAN; Claude NEGRIER; Antonio COPPOLA a Johannes OLDENBURG

Vydání

Haemophilia, HOBOKEN, Wiley, 2024, 1351-8216

Další údaje

Jazyk

angličtina

Typ výsledku

Článek v odborném periodiku

Obor

30205 Hematology

Stát vydavatele

Spojené státy

Utajení

není předmětem státního či obchodního tajemství

Odkazy

URL

Impakt faktor

Impact factor: 3.000

Označené pro přenos do RIV

Ano

Kód RIV

RIV/00216224:14110/24:00137905

Organizační jednotka

Lékařská fakulta

Klíčová slova anglicky

haemophilia A; haemostasis; health equity; Normalization; quality of life; treatment goals

Štítky

14110321, rivok

Příznaky

Mezinárodní význam, Recenzováno

Změněno: 6. 12. 2024 12:28, Mgr. Tereza Miškechová

Anotace

V originále

BackgroundTreatment options for people with haemophilia are evolving at a rapid pace and a range of prophylactic treatment options using various technologies are currently available, each with their own distinct safety and efficacy profile.Treatment goalsThe access to replacement therapy and prophylaxis has driven a dramatic reduction in mortality and resultant increase in life expectancy. Beyond this, the abolition of bleeds and preservation of joint health represent the expected, but rarely attained, goals of haemophilia treatment and care. These outcomes also do not address the complexity of health-related quality of life impacted by haemophilia and its treatment.ConclusionCapitalizing on the major potential of therapeutic innovations, 'Normalization' of haemostasis, as a concept, should include the aspiration of enabling individuals to live as normal a life as possible, free from haemophilia-imposed limitations. To achieve this-being supported by the data reviewed in this manuscript-the concept of haemostatic and life Normalization needs to be explored and debated within the wider multidisciplinary teams and haemophilia community.

Citovat

HOLME, Pal Andre; Jan BLATNÝ; Pratima CHOWDARY; Riitta LASSILA; Niamh O'CONNELL; Cedric HERMANS; Maria Teresa Alvarez ROMAN; Claude NEGRIER; Antonio COPPOLA a Johannes OLDENBURG. Moving towards Normalization of haemostasis and health equity: Evolving treatment goals for haemophilia A. Haemophilia. HOBOKEN: Wiley, 2024, roč. 30, č. 5, s. 1109-1114. ISSN 1351-8216. Dostupné z: https://doi.org/10.1111/hae.15031.

@article{2457864,
   author = {Holme, Pal Andre and Blatný, Jan and Chowdary, Pratima and Lassila, Riitta and O'Connell, Niamh and Hermans, Cedric and Roman, Maria Teresa Alvarez and Negrier, Claude and Coppola, Antonio and Oldenburg, Johannes},
   article_location = {HOBOKEN},
   article_number = {5},
   doi = {https://doi.org/10.1111/hae.15031},
   keywords = {haemophilia A; haemostasis; health equity; Normalization; quality of life; treatment goals},
   language = {eng},
   issn = {1351-8216},
   journal = {Haemophilia},
   title = {Moving towards Normalization of haemostasis and health equity: Evolving treatment goals for haemophilia A},
   url = {https://onlinelibrary.wiley.com/doi/10.1111/hae.15031},
   volume = {30},
   year = {2024}
}

TY  - JOUR
ID  - 2457864
AU  - Holme, Pal Andre - Blatný, Jan - Chowdary, Pratima - Lassila, Riitta - O'Connell, Niamh - Hermans, Cedric - Roman, Maria Teresa Alvarez - Negrier, Claude - Coppola, Antonio - Oldenburg, Johannes
PY  - 2024
TI  - Moving towards Normalization of haemostasis and health equity: Evolving treatment goals for haemophilia A
JF  - Haemophilia
VL  - 30
IS  - 5
SP  - 1109-1114
EP  - 1109-1114
PB  - Wiley
SN  - 13518216
KW  - haemophilia A
KW  - haemostasis
KW  - health equity
KW  - Normalization
KW  - quality of life
KW  - treatment goals
UR  - https://onlinelibrary.wiley.com/doi/10.1111/hae.15031
N2  - BackgroundTreatment options for people with haemophilia are evolving at a rapid pace and a range of prophylactic treatment options using various technologies are currently available, each with their own distinct safety and efficacy profile.Treatment goalsThe access to replacement therapy and prophylaxis has driven a dramatic reduction in mortality and resultant increase in life expectancy. Beyond this, the abolition of bleeds and preservation of joint health represent the expected, but rarely attained, goals of haemophilia treatment and care. These outcomes also do not address the complexity of health-related quality of life impacted by haemophilia and its treatment.ConclusionCapitalizing on the major potential of therapeutic innovations, 'Normalization' of haemostasis, as a concept, should include the aspiration of enabling individuals to live as normal a life as possible, free from haemophilia-imposed limitations. To achieve this-being supported by the data reviewed in this manuscript-the concept of haemostatic and life Normalization needs to be explored and debated within the wider multidisciplinary teams and haemophilia community.
ER  -

HOLME, Pal Andre; Jan BLATNÝ; Pratima CHOWDARY; Riitta LASSILA; Niamh O'CONNELL; Cedric HERMANS; Maria Teresa Alvarez ROMAN; Claude NEGRIER; Antonio COPPOLA a Johannes OLDENBURG. Moving towards Normalization of haemostasis and health equity: Evolving treatment goals for haemophilia A. \textit{Haemophilia}. HOBOKEN: Wiley, 2024, roč.~30, č.~5, s.~1109-1114. ISSN~1351-8216. Dostupné z: https://doi.org/10.1111/hae.15031.

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