Challenges and knowledge gaps facing hemophilia carriers today: Perspectives from patients and health care providers
Abstract 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 an...
| Main Authors: | , , , , |
|---|---|
| Format: | Article |
| Language: | English |
| Published: |
Elsevier
2022-08-01
|
| Series: | Research and Practice in Thrombosis and Haemostasis |
| Subjects: | |
| Online Access: | https://doi.org/10.1002/rth2.12783 |
| _version_ | 1827882860872204288 |
|---|---|
| author | Megan Chaigneau Monique Botros Julie Grabell Wilma Hopman Paula James |
| author_facet | Megan Chaigneau Monique Botros Julie Grabell Wilma Hopman Paula James |
| author_sort | Megan Chaigneau |
| collection | DOAJ |
| description | Abstract 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. |
| first_indexed | 2024-03-12T19:03:14Z |
| format | Article |
| id | doaj.art-5e6825ec135b40b2b02c031aefada62b |
| institution | Directory Open Access Journal |
| issn | 2475-0379 |
| language | English |
| last_indexed | 2024-03-12T19:03:14Z |
| publishDate | 2022-08-01 |
| publisher | Elsevier |
| record_format | Article |
| series | Research and Practice in Thrombosis and Haemostasis |
| spelling | doaj.art-5e6825ec135b40b2b02c031aefada62b2023-08-02T06:26:02ZengElsevierResearch and Practice in Thrombosis and Haemostasis2475-03792022-08-0166n/an/a10.1002/rth2.12783Challenges and knowledge gaps facing hemophilia carriers today: Perspectives from patients and health care providersMegan Chaigneau0Monique Botros1Julie Grabell2Wilma Hopman3Paula James4Queen's University Kingston Ontario CanadaQueen's University Kingston Ontario CanadaDeparment of Medicine Queen's University Kingston Ontario CanadaKGH Research Institute Kingston Ontario CanadaDeparment of Medicine Queen's University Kingston Ontario CanadaAbstract 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.https://doi.org/10.1002/rth2.12783attitudesdelivery of health caregenetic carrier screeninghealth knowledgehemophiliapractice |
| spellingShingle | Megan Chaigneau Monique Botros Julie Grabell Wilma Hopman Paula James Challenges and knowledge gaps facing hemophilia carriers today: Perspectives from patients and health care providers Research and Practice in Thrombosis and Haemostasis attitudes delivery of health care genetic carrier screening health knowledge hemophilia practice |
| 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 | attitudes delivery of health care genetic carrier screening health knowledge hemophilia practice |
| url | https://doi.org/10.1002/rth2.12783 |
| work_keys_str_mv | AT meganchaigneau challengesandknowledgegapsfacinghemophiliacarrierstodayperspectivesfrompatientsandhealthcareproviders AT moniquebotros challengesandknowledgegapsfacinghemophiliacarrierstodayperspectivesfrompatientsandhealthcareproviders AT juliegrabell challengesandknowledgegapsfacinghemophiliacarrierstodayperspectivesfrompatientsandhealthcareproviders AT wilmahopman challengesandknowledgegapsfacinghemophiliacarrierstodayperspectivesfrompatientsandhealthcareproviders AT paulajames challengesandknowledgegapsfacinghemophiliacarrierstodayperspectivesfrompatientsandhealthcareproviders |