A multi-stakeholder collaborative approach to awareness, education and support needed in the haemophilia gene therapy patient journey – a report on insights from a European patient advisory board
, , , , , , , et 18 avr. 2024
À propos de cet article
Catégorie d'article: Clinical Practice
Publié en ligne: 18 avr. 2024
Pages: 47 - 57
DOI: https://doi.org/10.2478/jhp-2024-0007
Mots clés
© 2024 Brian O’Mahony et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
Figure 1:
Gene therapy information sharing in ‘formal’ and ‘informal’ settings
| FORMAL: HCPS, PATIENT ORGANISATIONS | INFORMAL: PEER-TO-PEER | |
|---|---|---|
| INFORMATION / DISCUSSION | Ensuring patient understanding of gene therapy for haemophilia Pros, cons and potential risks Motivations for having gene therapy (patient preferences and goals) Specifics of particular gene therapy products Follow-up requirements and rationale |
Adding context/detail to pros, cons and risks explained by the clinical team Best and worst parts of individual gene therapy experience Experience of follow-up requirements Impact(s) on family (e.g. corticosteroid side effects, family planning) Alcohol avoidance |