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

Aida Peyvandi1, Ilaria Cutica2, Isabella Garagiola3

  • 1Department of Neurosciences and Mental Health, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico, Milan, Italy.

Haemophilia : the Official Journal of the World Federation of Hemophilia
|November 18, 2025
PubMed
Summary

Gene therapy (GT) offers hope for haemophilia patients, but requires continuous psychological support. Addressing emotional needs before, during, and after GT is crucial for successful outcomes and improved quality of life.

Keywords:
gene therapyhaemophiliapatient‐centred carepsychological supporttreatment‐related adaptation

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Area of Science:

  • Hematology
  • Psychology
  • Medical Genetics

Background:

  • Gene therapy (GT) is a groundbreaking treatment for haemophilia, aiming for long-term symptom control.
  • While GT's medical benefits are well-researched, its psychological implications are often overlooked.

Purpose of the Study:

  • To highlight the critical need for ongoing psychological support for individuals with haemophilia undergoing gene therapy.
  • To emphasize the importance of this support throughout all phases of treatment: pre-therapy, during therapy, and post-therapy.

Main Methods:

  • Exploration of the psychological experiences of individuals with haemophilia during gene therapy.
  • Identification of emotional challenges faced at different stages of the treatment process.
  • Consideration of psychological support needs for those ineligible for gene therapy.

Main Results:

  • Patients experience a spectrum of emotions, including anxiety and uncertainty, during the transition to potential long-term freedom from treatment.
  • Psychological support is vital for managing expectations, anxiety, and coping with the procedural and physiological aspects of GT.
  • Emotional responses to treatment outcomes and ineligibility for GT necessitate careful psychological management.

Conclusions:

  • Recognizing the psychological dimensions of gene therapy is essential for healthcare providers.
  • Comprehensive psychological support strategies can improve treatment adherence, emotional resilience, and overall quality of life for haemophilia patients.