Cargando…

Challenges and knowledge gaps facing hemophilia carriers today: Perspectives from patients and health care providers

BACKGROUND: 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: The primary objective was to describe the current knowledge gaps and chall...

Descripción completa

Detalles Bibliográficos
Autores principales: Chaigneau, Megan, Botros, Monique, Grabell, Julie, Hopman, Wilma, James, Paula
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9487445/
https://www.ncbi.nlm.nih.gov/pubmed/36186104
http://dx.doi.org/10.1002/rth2.12783
_version_ 1784792470795583488
author Chaigneau, Megan
Botros, Monique
Grabell, Julie
Hopman, Wilma
James, Paula
author_facet Chaigneau, Megan
Botros, Monique
Grabell, Julie
Hopman, Wilma
James, Paula
author_sort Chaigneau, Megan
collection PubMed
description BACKGROUND: 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: 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: 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: 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.
format Online
Article
Text
id pubmed-9487445
institution National Center for Biotechnology Information
language English
publishDate 2022
publisher John Wiley and Sons Inc.
record_format MEDLINE/PubMed
spelling pubmed-94874452022-09-30 Challenges and knowledge gaps facing hemophilia carriers today: Perspectives from patients and health care providers Chaigneau, Megan Botros, Monique Grabell, Julie Hopman, Wilma James, Paula Res Pract Thromb Haemost Original Articles BACKGROUND: 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: 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: 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: 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. John Wiley and Sons Inc. 2022-09-20 /pmc/articles/PMC9487445/ /pubmed/36186104 http://dx.doi.org/10.1002/rth2.12783 Text en © 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). https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by-nc-nd/4.0/ (https://creativecommons.org/licenses/by-nc-nd/4.0/) License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non‐commercial and no modifications or adaptations are made.
spellingShingle Original Articles
Chaigneau, Megan
Botros, Monique
Grabell, Julie
Hopman, Wilma
James, Paula
Challenges and knowledge gaps facing hemophilia carriers today: Perspectives from patients and health care providers
title Challenges and knowledge gaps facing hemophilia carriers today: Perspectives from patients and health care providers
title_full Challenges and knowledge gaps facing hemophilia carriers today: Perspectives from patients and health care providers
title_fullStr Challenges and knowledge gaps facing hemophilia carriers today: Perspectives from patients and health care providers
title_full_unstemmed Challenges and knowledge gaps facing hemophilia carriers today: Perspectives from patients and health care providers
title_short Challenges and knowledge gaps facing hemophilia carriers today: Perspectives from patients and health care providers
title_sort challenges and knowledge gaps facing hemophilia carriers today: perspectives from patients and health care providers
topic Original Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9487445/
https://www.ncbi.nlm.nih.gov/pubmed/36186104
http://dx.doi.org/10.1002/rth2.12783
work_keys_str_mv AT chaigneaumegan challengesandknowledgegapsfacinghemophiliacarrierstodayperspectivesfrompatientsandhealthcareproviders
AT botrosmonique challengesandknowledgegapsfacinghemophiliacarrierstodayperspectivesfrompatientsandhealthcareproviders
AT grabelljulie challengesandknowledgegapsfacinghemophiliacarrierstodayperspectivesfrompatientsandhealthcareproviders
AT hopmanwilma challengesandknowledgegapsfacinghemophiliacarrierstodayperspectivesfrompatientsandhealthcareproviders
AT jamespaula challengesandknowledgegapsfacinghemophiliacarrierstodayperspectivesfrompatientsandhealthcareproviders