Results of a questionnaire for women with bleeding disorders at the Coagulation Unit, Karolinska University Hospital, Sweden

Malin Svennefalk; Petra Elfvinge; Helena Ullgren

doi:10.2478/jhp-2025-0018

Abstract

Abstract Introduction

With correct diagnosis and treatment, women with bleeding disorders can live their lives without the pressure of having heavy menstrual bleeding (HMB) and the concern of postpartum bleeding, thus improving quality of life (QoL). As health care professionals (HCPs), we have the opportunity to advise, support and educate our patients, guiding them to optimal treatment and care.

Aim

Our aim was to gain insight into the experience of HMB and concerns around reproductive issues for women with bleeding disorders treated in the Coagulation Unit at Karolinska University Hospital.

Method

We conducted a questionnaire regarding lifestyle and suspected challenges facing women with bleeding disorders. Women aged 16 or above with a diagnosed bleeding disorder, registered with the Coagulation Unit, and able to read and understand Swedish were included. The questionnaire was self-administered during clinic attendance.

Results

Sixty-seven women were invited to answer the questionnaire; all agreed to do so. Mean age was 32.5 years. Twenty-five experience HMB frequently; 51 experienced HMB during their teenage years. Most take some form of treatment during menstruation, the most common being tranexamic acid. Thirty-one experience HMB to some extent despite taking treatment. More than half have required blood transfusion/s at some stage. Most feel or have felt anxiety regarding future family planning/childbirth due to their bleeding disorder.

Conclusions

Many women who responded to our questionnaire experience HMB, despite most of them often or sometimes taking some form of treatment. A number have had blood transfusion(s), and more than half feel or have felt anxiety regarding future family planning and childbirth. This clearly suggests that we need to incorporate routines that offer support, guidance and education, and which involve gynaecology, obstetrics and genetic counselling.

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Authors

Malin Svennefalk

malin.svennefalk@regionstockholm.se

Coagulation Unit, Karolinska Comprehensive Cancer Centre, Stockholm, Sweden
Petra Elfvinge

Coagulation Unit, Karolinska Comprehensive Cancer Centre, Stockholm, Sweden
Helena Ullgren

Department of Oncology-Pathology, Karolinska Institute, Stockholm, Sweden