Women and bleeding Dr. Nita Radhakrishnan Sir Ganga Ram Hospital, New Delhi, India Annual Meet WG HFI 6 Dec 2014.

Women and bleeding

Dr. Nita RadhakrishnanSir Ganga Ram Hospital,

New Delhi, India

Annual Meet WG HFI 6 Dec 2014

Woman

• Challenges in the life of a woman – Many

• Hemostatic challenges in the life of a woman

– Menstruation (Menorrhagia = Heavy menstrual bleeding)– Pregnancy – Childbirth

Bleeding disorders in women

Hemophilia A, B carrier state

Von Willebrand disease

Rare bleeding disorders

Inherited platelet disorders

What has history taught us?

Royal disease

• Queen Victoria • Had no ancestors with hemophilia • 9 children • Disease appeared in her 8th child Leopold who was

“very delicate” • “We must have some strong blood”

• Spread to the royal family of England • Spread to German, Russian and Spanish royal families

Von Willebrand disease

• Most common bleeding disorder • 1% of the population • Eric von Willebrand

• Index case: 5 year old died eight years later following menstrual bleeding

• 23 affected family members • Her grandmother died following delivery

Why is bleeding more in women in VWD?

More hemostatic challenges in a woman

Menstrual Cycle is a Vital Sign• American College of Obstetricians and Gynecologists• American Academy of Pediatrics

• Normal menstruation – Begins at 11 to 14 years of age– Normal interval is is 21 to 45 days– Normal length of menstrual flow is 7 days or less – Not more than 3-6 pads/ tampons per day

• What is not normal? – Heavy menstrual bleeding

• >7 days • Loss of more than 80 ml per menstrual cycle

– Ovarian cysts with bleeding – Endometriosis – Bleeding following delivery lasting > 24hours

Ovarian cysts with bleeding

• Ovulation with bleeding is never normal• 7% of VWD reported to have bleeding ovarian cysts

• Can bleed into the abdominal cavity• Increases risk of endometriosis

Problems during menstruation

Pregnancy and bleeding

• 4067 deliveries in women with vWd • 2000-2003 (USA)

• Risk of bleeding before delivery 10.2• Risk of bleeding following delivery 1.5• Risk of receiving blood transfusion 4.7 • Risk of death in mother low (but still high than

normal women)

James A 2007

Problems during childbirth

• Childbirth in women with inherited bleeding disorders

Primary PPH Secondary PPH

Normal 5 0.7%

Hemophilia carriers

22% 11%

VWD 19% 29%

It is also not normal

• Prolonged bleeding from cuts• Following surgery• Bruising without any trauma• Nose bleeds• Following tooth extraction• Blood in stools • Anemia requiring blood transfusion

What is the prevalence of inherited bleeding disorders in women with menorrhagia?

• Systematic review 998 women with menorrhagia: 13% had vWD

Shankar M BJOH 2004

• 7/75 women with menorrhagia had underlying bleeding disorder

N Sherif 2014

• 53% had underlying bleeding disorder Rosa Diaz 2014

• 47.8% had some underlying hemostatic disorder– 17.7% platelet dysfunction – 13.3% Von Willebrand disease – 12.4% factor deficiency

V Serevalli 2013• 14.5% had bleeding disorders– 6.5% von Willebrand disease in five – 5.2% platelet function disorder

Turkiz Gursel 2014

• 120 women with menorrhagia – 19.16% had bleeding disorder – 11.6% VWD – 3.3% Glanzmann thrombasthenia

Sucheta Trasi 2005

Testing for bleeding disorders is a must for

Adolescent girls who present with menorrhagia Adult women with chronic menorrhagia who

have no other cause Women who are about to undergo hysterectomy

for menorrhagia ACOG 2002

Gender issues

If VWD presents more in women, why are less women diagnosed in India?

• HTCs were originally created to treat men with hemophilia

• Since 1990s almost 9000 women have sought medical care in HTCs across USA

• Indian data?

Number of women in HTCs in USA

What proportion of women with inherited bleeding disorders have menorrhagia?

• 70-100% of those with vWD• 10-70% of those with other inherited disorders • 5-98% with inherited platelet disorders

• Significantly longer, heavier menstruation• Significantly more hysterectomies for

menorrhagia

What are the chances of needing medical care once diagnosed?

S Sanders 2012

How does bleeding affect their lives?

Health related QOL in VWD

• Women with VWD significantly worse than those of men with VWD

• Almost as low as that of severe hemophilia

• More school absenteeism • Less women likely to undergo secondary

education than men (5.5% vs 35%)

QOL differences between men and women with VWD

QOL differences between those who had menorrhagia and who did not

Kadir K Khair 2013

K Khair 2013

K Khair 2013

K Khair 2013

Whom do you speak to often?

What restrictions do you face?

K Khair 2013

Health related QOL in VWD

• 39% cut down their activities due to menorrhagia

• 39% had to cut down the work that they do• 47% felt they had accomplished less

• 19.3% felt that dysmenorrhea affected their lives• 22.6% did not go to school/work during periods• 48.4% were hospitalized for a heavy menstrual

bleeding Fadhlaoui A 2012

Survey of health related QOL study

• SF 36 v2 survey • 30 subjects

• 3 groups

• Girls (Indian) with bleeding disorders • Girls with leukemia undergoing chemotherapy• Normal age matched controls

Radhakrishnan N (unpublished)

How healthy are you? 1 very good – 5 very poor

FBD

Leukemia

Normal

0 0.5 1 1.5 2 2.5 3

Series 1

Does health limit you in your activities?1: A lot 2: Little 3: Not at all

FBD

Leukemia

Normal

0 0.5 1 1.5 2 2.5 3

Has you health interfered with social activities?

1:No 5:Very much

FBD

Leukemia

Normal

0 0.5 1 1.5 2 2.5 3

Factors that determined QOL

• Underlying bleeding disorder

• Being female

• Bleeding disorder (VWD) and being female

Is there a severity scale for QOL?

Awareness is less in at all stages

Surveying gynecologists

• 983 ACOG members surveyed in 1996• 8% of their patients complained about

menorrhagia • 74% patients presumed to have anovulatory cycles • 4% doctors considered VWD as a cause of

menorrhagia • 3% considered referring them to specialists• <1% of women should have a bleeding disorder

VR Byams 2007

Surveying gynecologists

• Repeated the survey in 2009 – 1200 gynecologist interviewed by mail – 42.4% (503) responded to the survey

• >70% enquired about other sites of bleeding • >60% enquired about a family history of bleeding • 77% said they would consider VWD as a cause

• What caused this change?Efforts by hematology providers, community based organizations, government to raise awareness

VR Byams 2012

Surveying gynecologists UK

• > 80% of the respondents considered the prevalence of VWD in women with menorrhagia to be <1%

• 12% and 2% of the respondents would consider testing for VWD in an 18 and a 35 year old

Chi C 2006

How can we improve?

• Raise awareness (Advocacy)

• General public • Schools• Young girls • Doctors

Total Score >100 is equivalent to >80ml blood loss per cycle

Total score:

PICTORIAL BLEEDING ASSESSMENT CALENDAR Higham JM, O’Brien PM, Shaw RWAssessment of menstrual blood loss using a pictorial chartBr J Obstet Gynecol 1990; 97:734-9

DayPad 1 2 3 4 5 6 7 8

1

5

20

Daily score

Day Tampone1 2 3 4 5 6 7 8

1

5

20

Daily score

International efforts to raise awareness

• Women bleed too (UK)

• Project Red Flag (USA)

• MyGirlsBlood

• WG HFI

To conclude

• Lets protect girls with any bleeding disorder • Collaborative efforts

Look after menstrual hygieneHeavy menstrual bleeding

Identify potential bleeders from the populationPrevent complications

Thank you

[email protected]+91 9999041524