Original Study
Menorrhagia in Adolescents with Inherited Bleeding Disorders

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Abstract

Study Objectives

We reviewed the management and treatment outcomes of menorrhagia in adolescents with inherited bleeding disorders and assessed the impact of menorrhagia on their quality of life.

Design

Retrospective review of case notes and a questionnaire study.

Setting

Comprehensive-care hemophilia treatment center.

Participants

Adolescents with inherited bleeding disorders who had registered at the center and were attending the multidisciplinary hemophilia and gynecology clinic for management of menorrhagia.

Interventions

Review of medical records and assessment of menstrual blood loss using the pictorial blood assessment chart and quality of life measurements during menstruation using a questionnaire.

Main Outcome Measures

Scores on pictorial blood assessment charts and quality of life measurements before and after treatment.

Results

Of 153 girls aged 12 to 19 years who had registered at the center and had an inherited bleeding disorder, 42 (27%) attended the multidisciplinary clinic for management of menorrhagia. The majority (38/42; 90%) had experienced menorrhagia since menarche. Of the group, 5 (12%) required hospital admission for acute menorrhagia and severe anemia. Treatment options for menorrhagia included tranexamic acid, desmopressin, combined oral contraceptive pills, clotting factor concentrate, and the levonorgestrel intrauterine system. These treatment modalities, alone or in combination, were associated with a reduction in menstrual blood loss (median pre- and posttreatment pictorial blood assessment chart scores were 215 and 88, respectively) and improvement in quality of life scores (median pre- and posttreatment were 26 and 44, respectively).

Conclusions

Menorrhagia is a common symptom in adolescents with inherited bleeding disorders. It can present acutely, and it adversely affects quality of life. Treatment options include hemostatic and/or hormonal therapies and can improve the quality of life of affected girls.

Introduction

Menorrhagia is well recognized as a common bleeding symptom in women with inherited bleeding disorders.1, 2 Menorrhagia since menarche is commonly reported by these women, and many with acute and severe menorrhagia require hospital admission within first year of menarche.3, 4 The index case first described, a young woman with von Willebrand disease (VWD), the most common inherited bleeding disorder, bled to death during her fourth menstrual cycle at the age of 13.5

Menstrual disorders are common in adolescent girls in general. Many experience troublesome periods that are typically heavy and irregular. This is usually secondary to anovulatory cycles caused by the immaturity of the hypothalamic-pituitary-ovarian axis.6 Adolescent girls with inherited bleeding disorders may have heavier, longer, and more frequent menstrual bleeding due to their underlying hemostatic defects.

Excessive menstrual bleeding can cause significant distress and discomfort in adolescent girls. It also has major health implications, such as iron deficiency anemia and the need for hospitalization and blood transfusion in severe cases. It can affect their school attendance and performance. Currently, there are limited data concerning the management of menorrhagia and its effects on the quality of life (QOL) of adolescent girls who have inherited bleeding disorders. This study examined the severity, management, and treatment outcomes of menorrhagia in these adolescents. It also assessed the impact of menorrhagia and its treatment on their QOL.

Section snippets

Materials and Methods

Adolescent girls aged 12 to 19 years who were on the register at the Katharine Dormandy Haemophilia Centre and Thrombosis Unit (Royal Free Hospital, London, UK) on October 1, 2007, and who had attended the multidisciplinary hematology and gynecology clinic complaining of menorrhagia between 2004 and 2008 were identified, and their case notes were reviewed. The data collected included demographic details, the type of bleeding disorder, personal and family bleeding history, age of menarche, age

Results

A total of 153 adolescent girls between 12 and 19 years of age who had an inherited bleeding disorder were on the register at the Katharine Dormandy Haemophilia Centre and Thrombosis Unit (Royal Free Hospital, London, UK) on October 1, 2007. The types of their bleeding disorders are shown in Table 1. Overall, 42 (27%) attended the multidisciplinary clinic for menorrhagia. They included 72% (13/18) of girls who had platelet function disorders and 48% (20/53) of girls who had VWD. Of the group of

Discussion

This study demonstrates that menorrhagia is prevalent in adolescent girls with inherited bleeding disorders, particularly in those with platelet function disorders and VWD. In the majority (90%), menorrhagia started at menarche, and 12% of adolescents with menorrhagia required hospital admission for acute menstrual bleeding within the first year of menarche. The diagnosis of a bleeding disorder was known to most (64%) adolescents, so many were prepared for possible acute or severe bleeding at

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    • Cited by (0)

    Sources of Support: The study was funded by the Haemophilia Research UK, The Haemophilia Society, London, UK

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    Copyright © 2010 North American Society for Pediatric and Adolescent Gynecology. Published by Elsevier Inc. All rights reserved.