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

Haemophilia ◽  
2015 ◽  
Vol 21 (6) ◽  
pp. 742-746 ◽  
Author(s):  
A. Olsson ◽  
M. Hellgren ◽  
E. Berntorp ◽  
F. Baghaei
Keyword(s):  
Quality Of Life ◽  
Bleeding Tendency ◽  
Severe Haemophilia ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Health-related quality-of-life treatments for severe haemophilia: utility measurements using the Standard Gamble technique

Haemophilia ◽  
2002 ◽  
Vol 8 (2) ◽  
pp. 112-120 ◽  
Author(s):  
V. S. NARAINE ◽  
N. A. RISEBROUGH ◽  
P. OH ◽  
V. S. BLANCHETTE ◽  
S. LEE ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Standard Gamble ◽  
Severe Haemophilia ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Standard Gamble Technique

scholarly journals Gynaecological issues in women with bleeding disorders: CSL Behring Symposium

2019 ◽  
Vol 6 (2) ◽  
pp. 28-38
Author(s):  
Angelika Batorova ◽  
Karin van Galen ◽  
Sylvia von Mackensen ◽  
Ioannis Tsimpanakos ◽  
Evelyn Grimberg
Keyword(s):  
Quality Of Life ◽  
Pelvic Pain ◽  
Successful Outcome ◽  
Severe Bleeding ◽  
Bleeding Tendency ◽  
Bleeding Disorders ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Abstract The symposium focused on issues around surgery, ovulation bleeding, health-related quality of life (HRQoL) and pelvic pain in women with bleeding disorders. Surgery Young women with congenital bleeding disorders, especially those with severe forms, are more likely to experience gynaecological and obstetric disorders than unaffected women. Surgery may be required to manage heavy menstrual bleeding (HMB), ovulatory bleeding, endometriosis and delivery. Major surgery should be undertaken only in hospitals with a haemophilia centre and 24-hour laboratory capability. Correction of haemostasis, either by desmopressin, coagulation factor or platelet transfusion, is essential for a successful outcome of surgery. Management of pregnancy requires a multidisciplinary approach; the mode of delivery is based on the consensus of gynaecologist and haematologist, and with respect to the patient’s diagnosis. Ovulation bleeding Women with bleeding disorders are at risk for excessive gynaecological bleeding associated with menstruation, ovulation, pregnancy and delivery. Ovulation bleeding is associated with the rupture of ovarian cysts and causes abdominal pain; complications include haemoperitoneum, fertility problems and ovarian torsion. Management includes hormonal and haemostatic therapies, in combination if necessary, and surgery as a last resort. Current management is based on experience in a relatively small number of cases and more clinical data are needed. Health-related quality of life In addition to experiencing joint and tissue bleeds, women experience psychosocial and medical issues associated with menstruation, pregnancy, labour and delivery. HMB has the greatest impact, and is associated with impaired HRQoL in almost all and dissatisfaction with the burden of treatment. There is a need for focused psychosocial support and a specific tool for the assessment of HRQoL in women with bleeding disorders. Pelvic pain Gynaecological causes of pelvic pain in women with bleeding disorders include dysmenorrhoea, mid-cycle pain, bleeding into the corpus luteum and endometriosis. There is no correlation between bleeding tendency and endometriosis severity; however, screening for a bleeding disorder should be considered. Pharmacological management may be hormonal or non-hormonal. Gonadotrophin-releasing hormone agonists offer an alternative to surgery for women with severe bleeding disorders who have endometriosis. Paracetamol is the preferred early analgesic option. Endometrial ablation controls heavy bleeding and pelvic pain but is not recommended for women with large fibroids or a large endometrial cavity. Hysterectomy is an option of last resort. Education for health professionals should include raising awareness about the management of pain in women with bleeding disorders.

scholarly journals The impact of severe haemophilia and the presence of target joints on health-related quality-of-life

2018 ◽  
Vol 16 (1) ◽  
Author(s):  
Jamie O’Hara ◽  
Shaun Walsh ◽  
Charlotte Camp ◽  
Giuseppe Mazza ◽  
Liz Carroll ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Severe Haemophilia ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

scholarly journals The Impact of Haemophilia Complications on Health-Related Quality of Life for Adults with Severe Haemophilia

2016 ◽  
Vol 19 (7) ◽  
pp. A593 ◽  
Author(s):  
G Mazza ◽  
J O'Hara ◽  
L Carroll ◽  
C Camp ◽  
C Stentoft Hoxer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Severe Haemophilia ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Illustrating the impact of mild/moderate and severe haemophilia on health-related quality of life: hypothesised conceptual models

2014 ◽  
Vol 93 ◽  
pp. 9-18 ◽  
Author(s):  
Emuella Flood ◽  
Jennifer Pocoski ◽  
Lisa A. Michaels ◽  
Jill A. Bell ◽  
Satish Valluri ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Conceptual Models ◽  
Severe Haemophilia ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

scholarly journals Health-related quality of life of moderate and severe haemophilia patients: Results of the haemophilia-specific quality of life index in Korea

PLoS ONE ◽  
2020 ◽  
Vol 15 (9) ◽  
pp. e0238686
Author(s):  
Hee Jo Baek ◽  
Young Shil Park ◽  
Ki Young Yoo ◽  
Jin-Hye Cha ◽  
Young-Joo Kim ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Severe Haemophilia ◽  
Health Related Quality ◽  
Life Index ◽  
Related Quality ◽  
Health Related ◽  
Quality Of Life Index

Bone density and health-related quality of life in adult patients with severe haemophilia

Haemophilia ◽  
2010 ◽  
Vol 17 (2) ◽  
pp. 304-311 ◽  
Author(s):  
M. KHAWAJI ◽  
J. ASTERMARK ◽  
S. VON MACKENSEN ◽  
K. ÅKESSON ◽  
E. BERNTORP
Keyword(s):  
Quality Of Life ◽  
Bone Density ◽  
Adult Patients ◽  
Severe Haemophilia ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

Assessing health-related quality-of-life in patients with severe haemophilia A and B

1999 ◽  
Vol 4 (1) ◽  
pp. 5-15 ◽  
Author(s):  
A. H. Miners ◽  
C. A. Sabin ◽  
K. H. Tolley ◽  
C. Jenkinson ◽  
S. Ebrahim ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Haemophilia A ◽  
Severe Haemophilia ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related

scholarly journals Health-Related Quality of Life of Patients With Haemophilia - A Cross-Sectional Survey in the Northeast of China

2021 ◽  
Author(s):  
Jinyu Niu ◽  
Liangwen Ning ◽  
Qiao Zhang ◽  
Ze Liu ◽  
Yi Ma ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Soft Tissues ◽  
Utility Score ◽  
Severe Haemophilia ◽  
Health Related Quality ◽  
Snowball Sampling ◽  
Cross Sectional Survey ◽  
Related Quality ◽  
Health Related

Abstract Introduction: Haemophilia is a hereditary, chronic, and hemorrhagic disorder caused by a deficiency in coagulation factors. Long-term spontaneous bleeding of joints and soft tissues can seriously affect the quality of life of patients. Objectives: The study aimed to assess the health-related quality of life of patients with haemophilia and associated factors. Methods: A snowball sampling strategy was adopted to select study participants. Eligible participants were those who were 18 years or older and had mild, moderate or severe haemophilia. They were asked to self-complete a questionnaire, collecting data regarding their sociodemographic characteristics, target joint status, and health related quality of life measured by the EQ-5D-5L. Results: The respondents reported a mean EQ-5D utility score of 0.51 (SD=0.34). Those with severe haemophilia had a lower utility score than those with mild/moderate haemophilia (0.46±0.37 vs 0.56±0.30, p =0.737). The linear regression analyses showed that older age (>25 years), two or more target joints, not working, low levels of knowledge of the disease, and borrowing money to pay for medical treatments were associated with lower EQ-5D utility scores . Conclusion: Low health related quality of life of haemophilia patients is evident in China. Social support needs to be strengthened to address this issue.

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