PB0446 - Carrier Burden Questionnaire (CBQ) – Identifying the great psychological darkness beyond bleeding events

Background: Recent evidence challenges the assumption that haemophilia carriers are symptom-free, indicating an increased risk of bleeding even in those with normal factor VIII/IX levels. Consequently, carriers experience reduced quality of life (QoL), particularly in mental health. However a comprehensive assessment of QoL considering physiological, psychological, and social factors remains limited in literature and clinical practice.

Aims: This project aims to develop and validate an assessment tool addressing QoL in haemophilia carriers. Additionally, it aims to enhance participants' QoL through coaching and contribute to scientific evidence on the diminished QoL of female and transgender haemophilia carriers.

Methods: In a single-centre, three-stage approach, 20 confirmed haemophilia carriers were enrolled in a coaching program. Alongside medical examinations, physiological and psychological distress were assessed. Qualitative data on QoL were collected, following WHO guidelines, covering all life stages.5
Participants' qualitative statements formed the basis for a Carrier Burden Questionnaire (CBQ), currently undergoing evaluation, validation, and finalization.

Results: Participants' average age was 28.7 years most were mothers with an average of 2.2 children per participant. Twelve had haemophilia A and eight had haemophilia B. Importantly there were no QoL differences between the two groups. Experiences and concerns of all participants fell into nine thematic clusters including heavy menstrual bleeding empathy for their own children negative self-perception and communication challenges. These clusters informed the development of the initial questionnaire for further analysis. The final CBQ along with relevant items and reliability results will be presented at the congress. Feedback from coaching participants highlights its significant contribution to improving QoL.

Conclusion(s): Being a haemophilia carrier significantly impacts the QoL of female and potentially transgender individuals. This necessitates innovative management strategies, with coaching showing promise as a valuable tool.