Developing a Public Health Research Agenda for Women with Blood Disorders

Byams, Vanessa R.; Beckman, Michele G.; Grant, Althea M.; Parker, Christopher S.

doi:10.1089/jwh.2010.2127

Cited by 4 publications

(6 citation statements)

References 19 publications

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“…[3][4][5][6][7] The term HC, and its associated connotations, such as obligate and possible carriers, has hampered diagnosis, management, and research. 8,9 For each man with hemophilia, 1.6 female carriers can be identified. 10,11 In the US surveillance database, Centers for Disease Control and Prevention (CDC) Community Counts, only 0.5% of severe, 1.4% of moderate, and ~20% of mild cases are female.…”

Section: Backg Round and R Ationalementioning

confidence: 99%

“…6,10,[21][22][23] Hemophilia carriers may not receive care in hemophilia treatment/comprehensive care centers (HTC/CCCs) and thus are likely underrepresented in surveillance databases, limiting our ability to characterize their bleeding symptoms and diagnostic journey. 8,9,24 Lack of timely diagnosis and appropriate nomenclature can lead to marginalization of HCs and a poor relationship with the HCPs and payers. 12 Terminologies that acknowledge differences in clinical HC types could contribute to reverse such inadequate and inequitable management.…”

Section: Backg Round and R Ationalementioning

confidence: 99%

“…The common misconception by patients and health‐care providers (HCPs) that all HCs are asymptomatic is shifting, due to an increasing body of evidence that contradicts this assumption 3–7 . The term HC, and its associated connotations, such as obligate and possible carriers, has hampered diagnosis, management, and research 8,9 …”

Section: Background and Rationalementioning

confidence: 99%

“… 3 , 4 , 5 , 6 , 7 The term HC, and its associated connotations, such as obligate and possible carriers, has hampered diagnosis, management, and research. 8 , 9 …”

Section: Background and Rationalementioning

confidence: 99%

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A new hemophilia carrier nomenclature to define hemophilia in women and girls: Communication from the SSC of the ISTH

Galen

d’Oiron

James

et al. 2021

Journal of Thrombosis and Haemostasis

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Hemophilia A and B predominantly attracts clinical attention in males due to X‐linked inheritance, introducing a bias toward female carriers to be asymptomatic. This common misconception is contradicted by an increasing body of evidence with consistent reporting on an increased bleeding tendency in hemophilia carriers (HCs), including those with normal factor VIII/IX (FVIII/IX) levels. The term HC can hamper diagnosis, clinical care, and research. Therefore, a new nomenclature has been defined based on an open iterative process involving hemophilia experts, patients, and the International Society on Thrombosis and Haemostasis (ISTH) community. The resulting nomenclature accounts for personal bleeding history and baseline plasma FVIII/IX level. It distinguishes five clinically relevant HC categories: women/girls with mild, moderate, or severe hemophilia (FVIII/IX >0.05 and <0.40 IU/ml, 0.01–0.05 IU/ml, and <0.01 IU/ml, respectively), symptomatic and asymptomatic HC (FVIII/IX ≥0.40 IU/ml with and without a bleeding phenotype, respectively). This new nomenclature is aimed at improving diagnosis and management and applying uniform terminologies for clinical research.

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Section: Backg Round and R Ationalementioning

confidence: 99%

Section: Backg Round and R Ationalementioning

confidence: 99%

Section: Background and Rationalementioning

confidence: 99%

“… 3 , 4 , 5 , 6 , 7 The term HC, and its associated connotations, such as obligate and possible carriers, has hampered diagnosis, management, and research. 8 , 9 …”

Section: Background and Rationalementioning

confidence: 99%

See 2 more Smart Citations

A new hemophilia carrier nomenclature to define hemophilia in women and girls: Communication from the SSC of the ISTH

Galen

d’Oiron

James

et al. 2021

Journal of Thrombosis and Haemostasis

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“…Since 1996, CDC has been committed to collaborative research to determine the prevalence of bleeding disorders, assess provider awareness of these conditions, and evaluate treatment and management options to improve care for women with bleeding disorders. 11 Likewise, the National Hemophilia Foundation (NHF) has been working to raise awareness that women are affected by bleeding disorders.…”

Section: Introductionmentioning

confidence: 99%

Providing Young Women with Credible Health Information about Bleeding Disorders

Rhynders¹,

Sayers²,

Presley³

et al. 2014

American Journal of Preventive Medicine

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Background Approximately 1% of U.S. women may have an undiagnosed bleeding disorder, which can diminish quality of life and lead to life-threatening complications during menstruation, childbirth, and surgery. Purpose To understand young women’s knowledge, attitudes, and perceptions about bleeding disorders and determine the preferred messaging strategy (e.g., gain- versus loss-framed messages) for presenting information. Methods In September 2010, a web-assisted personal interview of women aged 18–25 years was conducted. Preliminary analyses were conducted in 2011 with final analyses in 2013. In total, 1,243 women participated. Knowledge of blood disorders was tabulated for these respondents. Menstrual experiences of women at risk for a bleeding disorder were compared with those not at risk using chi-square analyses. Perceived influence of gain- versus loss-framed messages also was compared. Results Participants knew that a bleeding disorder is a condition in which bleeding takes a long time to stop (77%) or blood does not clot (66%). Of the women, 57% incorrectly thought that a bleeding disorder is characterized by thin blood; many were unsure if bleeding disorders involve blood types, not getting a period, or mother and fetus having a different blood type. Women at risk for a bleeding disorder were significantly more likely to report that menstruation interfered with daily activities (36% vs 9%); physical or sports activities (46% vs 21%); social activities (29% vs 7%); and school or work activities (20% vs 9%) than women not at risk. Gain-framed messages were significantly more likely to influence women’s decisions to seek medical care than parallel loss-framed messages. Findings suggest that the most influential messages focus on knowing effective treatment is available (86% gain-framed vs 77% loss-framed); preventing pregnancy complications (79% gain- vs 71% loss-framed); and maintaining typical daily activities during menstrual periods. Conclusions Lack of information about bleeding disorders is a serious public health concern. Health communications focused on gain-framed statements might encourage symptomatic young women to seek diagnosis and treatment. These findings and corresponding recommendations align with Healthy People 2020 and with CDC’s goal of working to promote the health, safety, and quality of life of women at every life stage.

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