An expert consensus to define how higher standards of equitable care for von Willebrand disease can be achieved in the UK and Republic of Ireland

被引:2
|
作者
Laffan, Mike [1 ,10 ]
Benson, Gary [2 ]
Farrelly, Cathy [3 ]
Gomez, Keith [4 ,5 ]
Jones, April [6 ]
Maclean, Rhona [7 ]
O'Donnell, James [8 ,9 ]
Lavin, Michelle [8 ,9 ]
机构
[1] Imperial Coll London, Ctr Haematol, London, England
[2] Belfast City Hosp, NI Haemophilia Comprehens Care Ctr, Belfast, North Ireland
[3] Liverpool Hosp, Liverpool, England
[4] Royal Free London NHS Fdn Trust, Haemophilia Ctr, London, England
[5] Royal Free London NHS Fdn Trust, Thrombosis Unit, London, England
[6] Royal Victoria Infirm, Newcastle Upon Tyne, England
[7] Sheffield Royal Hallamshire, Sheffield, England
[8] Royal Coll Surgeons Ireland, Irish Ctr Vasc Biol, Sch Pharm & Biomol Sci, Dublin, Ireland
[9] St James Hosp, Natl Coagulat Ctr, Dublin, Ireland
[10] Imperial Coll, Hammersmith Hosp, Fac Med, Ducane Rd, London W12 0NN, England
关键词
access and evaluation; bleeding disorder; healthcare quality; heavy menstrual bleeding; von Willebrand disease; BLEEDING ASSESSMENT-TOOL; WFH; 2021; GUIDELINES; QUESTIONNAIRE; GENERATION; VALIDATION;
D O I
10.1111/hae.14765
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
IntroductionVon Willebrand Disease (VWD) is the most common inherited bleeding disorder. However, recognition of the disease by both the public and healthcare professionals lags behind that of other bleeding disorders, leading to delays in diagnosis and treatment for patients. Updated national guidelines are needed to highlight an appropriate pathway for managing VWD patients in a timelier manner. AimTo identify ways in which care for VWD can be achieved on a more equitable basis. MethodsUsing a modified Delphi approach, a panel of VWD experts developed 29 statements across five key themes. These were used to form an online survey that was distributed to healthcare professionals involved in VWD care across the UK and Republic of Ireland (ROI). Stopping criteria comprised 50 responses received, a 3-month window for response (February-April 2022) and 90% of statements passing consensus threshold. Threshold for consensus for each statement was agreed at 75%. ResultsA total of 66 responses were analysed with 29/29 statements achieving consensus of which 27 attained >= 90% agreement. From the high degree of consensus, eight recommendations were derived regarding how detection and management of VWD can be improved to provide equity of care between men and women. ConclusionImplementation of these eight recommendations across the VWD pathway has the potential to raise the standard of care for patients in the UK and ROI by reducing delays to diagnosis and treatment initiation.
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页码:819 / 826
页数:8
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