Managing expectations
One of the most important aspects of enzyme replacement therapy with NAGLAZYME® (galsulfase) is to manage patient and caregiver expectations. Practitioners should:
- Help patients and families understand that results vary and that it may take some time before some improvements are seen
- Help patients and families understand that fear of painful IV insertion may cause anxiety but that topical anesthetics, heat, and good hydration can be used to minimize any associated pain and related psychological issues
- Encourage families to speak with others who have had experience with MPS VI and ERT
- Ensure that caregivers and families understand that caring for patients with chronic conditions is different than caring for those with acute conditions
- Offer psychosocial support by providing access to counseling and interaction with other patients and caregivers in support groups
Most importantly, family-centered care coordination17 is essential. This means including patients and families in decision-making about treatment options while also considering cost constraints and other complexities that may interfere with outcomes.
For patients with slowly progressing disease in particular, families need to understand the potential ramifications of delaying treatment as well as the potential benefits of starting treatment before significant disability occurs.2
Next: Infusion appointments