Association between bleeding tendency and health‐related quality of life in carriers of moderate and severe haemophilia

Olsson, Anna; Hellgren, Margareta; Berntorp, Erik; Baghaei, Fariba

doi:10.1111/hae.12796

Cited by 19 publications

(19 citation statements)

References 25 publications

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“…These results suggest that the Self‐BAT is a promising screening tool for bleeding and warrants testing in other bleeding disorder populations, such as haemophilia carriers. Additionally, research has shown that quality of life, especially mental health, is diminished for haemophilia carriers . This is an important measure when assessing well‐being and treatment efficacy.…”

Section: Includes Information On All Haemophilia Carriers Enrolled (Nmentioning

confidence: 99%

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Evaluation of the self‐administered bleeding assessment tool (Self‐BAT) in haemophilia carriers and correlations with quality of life

et al. 2017

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Section: Includes Information On All Haemophilia Carriers Enrolled (Nmentioning

confidence: 99%

“…Additionally, research has shown that quality of life, especially mental health, is diminished for haemophilia carriers. 8 This is an important measure when assessing well-being and treatment efficacy.…”

Section: Evaluation Of the Self-administered Bleeding Assessment Toolmentioning

confidence: 99%

Evaluation of the self‐administered bleeding assessment tool (Self‐BAT) in haemophilia carriers and correlations with quality of life

et al. 2017

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“…Women who are carriers of hemophilia are usually without bleeding symptoms. Carriers with bleeding symptoms may experience inappropriate care, feel mistrusted and not taken seriously by the healthcare system (Renault et al 2011), and have impaired health-related quality of life (Olsson et al 2015).…”

Section: Introductionmentioning

confidence: 99%

“It was a lot Tougher than I Thought It would be”. A Qualitative Study on the Changing Nature of Being a Hemophilia Carrier

Lippe

Frich

Harris

et al. 2017

Journal of Genetic Counseling

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Studies on carriers of genetic disorders mainly focus on the process of genetic testing and reproductive choices, and less on how psychosocial aspects of being a carrier change over time. Our study sought to understand more about the psychosocial aspects of hemophilia carrier status, and thereby improve counseling aiming to advance carriers' quality of life and well-being. We analyzed 16 in-depth interviews from women who were carriers of hemophilia and had a son with hemophilia. Three themes emerged: Guilt and sorrow across generations; the choices and future consequences of genetic testing; and preparing to have a child with hemophilia. Experience with being a hemophilia carrier is a process that changes over time while feelings of guilt and sorrow run across generations. The carrier status may create "mothers-in-waiting" living at risk of having a sick child or not. The women think they are prepared to have a son with hemophilia, but experience more sadness than they expect when a son is diagnosed. Our findings suggest that health professionals, especially clinical geneticists and genetic counselors, carriers, families and patient organizations need to be aware that women's experiences of being a carrier of hemophilia changes during the biographical life course. The women may benefit from several rounds of genetic counseling at different stages of life.

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“…Previous studies have shown an increased risk of bleeding among carriers compared with women without bleeding disorders. The bleeding symptoms typically include menorrhagia and/or excessive bleeding in association with pregnancy and delivery and reduced health‐related quality of life (HRQL) . Importantly, bleeding symptoms may also occur among those with normal factor activity and the phenotype seems only partially correlated with the factor activity .…”

Section: Introductionmentioning

confidence: 99%

Joint comorbidities among Swedish carriers of haemophilia: A register‐based cohort study over 22 years

et al. 2019

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Background A significant fraction of women with an impaired factor VIII or IX gene in the X chromosome, carriers of haemophilia, will have clotting factor activities corresponding to those seen in males with non‐severe haemophilia, hence, experience an increased bleeding tendency. Data describing the long‐term joint outcomes among carriers are limited. We compared the age at onset, frequency of joint‐related diagnoses as well as joint surgery and related hospitalizations among carriers of haemophilia with sex‐ and birthdate‐matched controls from the general population. Methods Carriers of haemophilia born 1941‐2008 were identified through the haemophilia treatment centres' (HTCs) databases and the National Patient Register of Sweden. For each carrier, we included up to five individuals using the Swedish population register as comparisons. Data for the period 1987‐2008 were obtained. Results Among 539 potential carriers identified, 213 had a known factor activity. Carriers with reduced factor activity and those with unknown factor activity had received their first joint‐related diagnosis at a significantly earlier age than their comparisons. The same subgroups showed an overall 2.3‐ and 2.4‐fold higher hazard for joint‐related diagnoses compared with the general population. In addition, the hazards of joint‐related outpatient hospitalization were 3.2‐fold (95% CI: 1.2, 9.1) and 2.5‐fold (95% CI: 1.6, 3.7). This was not observed for those with normal factor activity. Conclusion Carriers of haemophilia suffer a significant risk for joint comorbidities. This risk seems to correlate to the factor activity. Our findings underline the importance of regular clinical follow‐up of carriers at HTCs.

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Association between bleeding tendency and health‐related quality of life in carriers of moderate and severe haemophilia

Abstract: We conclude that the subgroup of carriers of haemophilia with increased bleeding tendency have impaired HRQOL. The SF-36 results indicate that this condition affects mental rather than physical health.

Cited by 19 publications

References 25 publications

Evaluation of the self‐administered bleeding assessment tool (Self‐BAT) in haemophilia carriers and correlations with quality of life

Evaluation of the self‐administered bleeding assessment tool (Self‐BAT) in haemophilia carriers and correlations with quality of life

“It was a lot Tougher than I Thought It would be”. A Qualitative Study on the Changing Nature of Being a Hemophilia Carrier

Joint comorbidities among Swedish carriers of haemophilia: A register‐based cohort study over 22 years

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