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 |