A Comprehensive Approach: Addressing Psychological Needs in Gene Therapy for Haemophilia

Gene therapy (GT) represents a transformative development in the treatment of haemophilia, offering the potential for long-lasting symptom control after a single administration. Although the scientific and medical aspects of this innovation have been widely studied, its psychological impact remains under-addressed.

This paper explores the importance of providing continuous psychological support to individuals with haemophilia who are undergoing GT, emphasizing its necessity before, during, and after treatment.

Persons living with haemophilia often experience a wide range of emotions, including hope, fear, anxiety, and uncertainty, particularly as they transition from managing a chronic condition to facing the possibility of long-lasting therapeutic benefit and enduring freedom from regular treatment. Psychological support plays a pivotal role in preparing them to understand and cope with the profound shifts that GT entails. In the pre-therapy stage, mental health professionals can help assess readiness, align expectations, and mitigate anxiety. During treatment, those with haemophilia may confront emotional stress related to the novelty, irreversibility, and physical effects of the procedure, including adverse reactions and the psychological consequences of steroid use. In the post-treatment phase, emotional responses to treatment outcomes require careful management. Moreover, those who are ineligible for GT may experience emotional distress that also warrants psychological support.

By recognizing these varied psychological dimensions, healthcare providers can implement comprehensive support strategies that enhance treatment adherence, emotional resilience, and quality of life.