Abstract Number: PB0586
Meeting: ISTH 2021 Congress
Theme: Hemophilia and Rare Bleeding Disorders » Hemophilia - Clinical
Background: Hemophilia carriers (HCs) face considerable hemostatic and psychological challenges during reproduction, though no recent qualitative studies have been published. Up-to-date knowledge on reproductive phases in the current era of hemophilia treatment and assessment of the psychosocial impact can assist healthcare professionals during conception and childbirth.
Aims: To assess the HCs’ perspective on healthcare, as well as the psychological impact in the current era of hemophilia treatment during all reproductive phases: preconception, pregnancy, childbirth and the postpartum period.
Methods: The study was approved by the medical ethics committee and informed consent was obtained. Focus group discussions (FGDs) and semi-structured interviews were conducted among HCs in January/February 2020 until data saturation was reached. All sessions were recorded, transcribed verbatim and analyzed by two independent researchers through thematic content analysis using MAXQDA® software. The results were then discussed within the research team until consensus was reached. The emerged themes were shared with and reviewed by the HCs and members of the Dutch hemophilia patient organization.
Results: Fifteen HCs were included during 3 FGDs and 4 interviews. Five central themes emerged: 1) communication by healthcare professionals, 2) lack of knowledge, 3) feeling insecure, 4) autonomy and 5) family experiences with hemophilia (Table 1). Desired improvements in care mainly concern counselling during preconception and pregnancy. This includes timely access to comprehensive information during each consecutive phase, healthcare professionals accepting HCs’ choices and healthcare provision tailored to the HC’s family experience with hemophilia.
Phase | |||||
Preconception | Pregnancy | Childbirth | Postpartum | ||
Themes | Communication by healthcare professionals | ● Timely, comprehensive information on carriership and consequences | ● Timely, comprehensive information on different scenarios ● Communication adjusted to personal experiences ● Efficient/ coordinated care ● Information exchange between involved HCPs |
● Delivery plan and discharge information exchange among involved HCPs and HCs ● Clear instructions at discharge |
● Information transfer to midwife/ maternity care ● Written take-home information for the mother and baby |
Lack of knowledge | ● HCPs outside CCCs | ● Obstetrician/ gynecologist, midwife |
|
● Maternity care | |
Feeling insecure | ● Upcoming choices during consecutive phases | ● Potentially affected child ● Safer in CCC ● Deciding on PND |
● Distance to CCC ● Lack of HCP experience with HCs ● Mode of delivery ● Maternal and neonatal (m/f) bleeding risk |
● Testing baby (m/f) ● Maternal and neonatal (m/f) bleeding risk |
|
Autonomy | ● Timing of carrier diagnosis ● Timing and method of preconception counselling |
● Gender assessment, PND, TOP ● Choice of midwife versus gynecologist ● Intensity and timing of outpatient clinic visits |
● Choice of midwife versus gynecologist ● Location of delivery |
● Timing testing baby ● Timing counselling on future pregnancies |
|
Family experiences | ● Severity of hemophilia and coping of family determines the attitude towards pregnancy | ● Severity of hemophilia and family attitudes influence PND and decisions regarding TOP | ● Home delivery possible | ● – | |
Legend: HCPs = Healthcare professionals; HCs, hemophilia carriers; CCCs = Comprehensive Care Centers; PND = prenatal diagnosis; m = male; f = female; TOP = Termination of pregnancy. |
Conclusions: In recent years, hemophilia treatment has seen major advances, which could impact general and reproductive care for HCs. HCs indicate that reproductive care would benefit from a more personal and informative approach. Healthcare professionals could use these insights to adapt their consultations to meet the needs of these women when (preparing for) having children.
To cite this abstract in AMA style:
Punt MC, Teela L, Fischer K, Bloemenkamp KWM, Lely AT, Driessens MHE, Pekel L, Haverman L, KPMv. A Qualitative Study on the Experiences of Hemophilia Carriers before, during and after Pregnancy [abstract]. Res Pract Thromb Haemost. 2021; 5 (Suppl 2). https://abstracts.isth.org/abstract/a-qualitative-study-on-the-experiences-of-hemophilia-carriers-before-during-and-after-pregnancy/. Accessed April 18, 2024.« Back to ISTH 2021 Congress
ISTH Congress Abstracts - https://abstracts.isth.org/abstract/a-qualitative-study-on-the-experiences-of-hemophilia-carriers-before-during-and-after-pregnancy/