Challenges and knowledge gaps facing hemophilia carriers today: Perspectives from patients and health care providers.
attitudes
delivery of health care
genetic carrier screening
health knowledge
hemophilia
practice
women's health
Journal
Research and practice in thrombosis and haemostasis
ISSN: 2475-0379
Titre abrégé: Res Pract Thromb Haemost
Pays: United States
ID NLM: 101703775
Informations de publication
Date de publication:
Aug 2022
Aug 2022
Historique:
received:
14
02
2022
revised:
07
06
2022
accepted:
22
07
2022
entrez:
3
10
2022
pubmed:
4
10
2022
medline:
4
10
2022
Statut:
epublish
Résumé
Hemophilia carriers experience abnormal bleeding symptoms; however, a lack of awareness about this topic coupled with additional knowledge gaps and barriers leads to suboptimal care for this population. The primary objective was to describe the current knowledge gaps and challenges from the perspective of both hemophilia carriers and their health care providers. We carried out a mixed methods descriptive study with two population groups between September and December 2020. The hemophilia carrier perspective was obtained through both focus groups and questionnaires, whereas the health care providers perspective obtained via questionnaire sent to the Association of Hemophilia Care Directors of Canada and the Canadian Association of Nurses in Hemophilia Care. Focus groups were analyzed using descriptive thematic analysis and quantitative survey data was also analyzed. Eleven hemophilia carriers participated along with 19 health care providers (11 physicians, eight nurses). Hemophilia carrier focus group discussions identified four areas representing major challenges or knowledge gaps: (1) negative psychosocial impacts; (2) difficulty determining symptom significance; (3) need for self-advocacy; (4) testing concerns. Survey results from both groups were aligned with the most important topics for ongoing education identified as information on abnormal bleeding symptoms, where to seek treatment, and considerations for heavy menstrual bleeding/menstruation. The majority of both study groups believe obligate or potential carriers should have factor levels checked regardless of age if symptoms of abnormal bleeding occur or before an invasive procedure. However, hemophilia carriers were significantly more in favor of genetic testing under the age of consent than health care providers in all scenarios evaluated.
Sections du résumé
Background
UNASSIGNED
Hemophilia carriers experience abnormal bleeding symptoms; however, a lack of awareness about this topic coupled with additional knowledge gaps and barriers leads to suboptimal care for this population.
Objective
UNASSIGNED
The primary objective was to describe the current knowledge gaps and challenges from the perspective of both hemophilia carriers and their health care providers.
Methods
UNASSIGNED
We carried out a mixed methods descriptive study with two population groups between September and December 2020. The hemophilia carrier perspective was obtained through both focus groups and questionnaires, whereas the health care providers perspective obtained via questionnaire sent to the Association of Hemophilia Care Directors of Canada and the Canadian Association of Nurses in Hemophilia Care. Focus groups were analyzed using descriptive thematic analysis and quantitative survey data was also analyzed.
Results
UNASSIGNED
Eleven hemophilia carriers participated along with 19 health care providers (11 physicians, eight nurses). Hemophilia carrier focus group discussions identified four areas representing major challenges or knowledge gaps: (1) negative psychosocial impacts; (2) difficulty determining symptom significance; (3) need for self-advocacy; (4) testing concerns. Survey results from both groups were aligned with the most important topics for ongoing education identified as information on abnormal bleeding symptoms, where to seek treatment, and considerations for heavy menstrual bleeding/menstruation. The majority of both study groups believe obligate or potential carriers should have factor levels checked regardless of age if symptoms of abnormal bleeding occur or before an invasive procedure. However, hemophilia carriers were significantly more in favor of genetic testing under the age of consent than health care providers in all scenarios evaluated.
Identifiants
pubmed: 36186104
doi: 10.1002/rth2.12783
pii: S2475-0379(22)02349-4
pmc: PMC9487445
doi:
Types de publication
Journal Article
Langues
eng
Pagination
e12783Informations de copyright
© 2022 The Authors. Research and Practice in Thrombosis and Haemostasis published by Wiley Periodicals LLC on behalf of International Society on Thrombosis and Haemostasis (ISTH).
Références
J Genet Couns. 2017 Dec;26(6):1324-1332
pubmed: 28547664
Haemophilia. 2021 Sep;27(5):837-847
pubmed: 34343384
Haemophilia. 2016 Nov;22(6):912-918
pubmed: 27868369
J Thromb Haemost. 2020 Dec;18(12):3211-3221
pubmed: 32979008
Haemophilia. 2015 Jan;21(1):e111-3
pubmed: 25422177
J Thromb Haemost. 2021 Jun;19(6):1506-1514
pubmed: 33774912
Haemophilia. 2014 Mar;20(2):e136-43
pubmed: 24533955
Haemophilia. 2017 Nov;23(6):e536-e538
pubmed: 28949433
Haemophilia. 2015 Nov;21(6):761-5
pubmed: 25930174
Am J Hum Genet. 1976 Sep;28(5):482-8
pubmed: 984044
Haemophilia. 2021 Nov;27(6):e675-e682
pubmed: 34415675
Haemophilia. 2019 Sep;25(5):845-850
pubmed: 31411798
Pediatrics. 2000 Dec;106(6):1460-5
pubmed: 11099604
Haemophilia. 2014 Nov;20(6):e426-9
pubmed: 25251752
Haemophilia. 2021 Sep;27(5):848-853
pubmed: 34146374
Haemophilia. 2007 Sep;13(5):633-41
pubmed: 17880455
Haemophilia. 2008 May;14(3):584-92
pubmed: 18282148
Br J Haematol. 2015 Jul;170(2):223-8
pubmed: 25832012
Blood. 2006 Jul 1;108(1):52-6
pubmed: 16551972
J Genet Couns. 2016 Dec;25(6):1257-1266
pubmed: 27193897
J Pediatr Hematol Oncol. 2014 May;36(4):e224-30
pubmed: 24309601
Haemophilia. 2010 Sep 1;16(5):842
pubmed: 20148976
Haemophilia. 2008 Jul;14 Suppl 3:181-7
pubmed: 18510540
J Thromb Haemost. 2021 Aug;19(8):1883-1887
pubmed: 34327828
Am J Hematol. 2014 Aug;89(8):831-6
pubmed: 24838518
Haemophilia. 2011 Mar;17(2):237-45
pubmed: 21118331