The main purpose of this survey is to determine participants', caregivers', and nurses' understanding and use of educational materials (EM) on VPRIV home treatment. EM includes an infusion diary and guide and an emergency plan related to VPRIV infusion given at home for Gaucher disease. The survey is conducted in European countries.
Data will be collected directly from participants, caregivers, and nurses in form of a questionnaire, electronic or paper.
Gaucher disease participants who receive VPRIV® for home infusion and their caregivers.
Home infusion nurses administering VPRIV® to participants with Gaucher disease at home.
None
This study will recruit Gaucher disease participants receiving VPRIV® home infusion, their caregivers and home infusion nurses who administer VPRIV® infusion at home in European countries.
Cohort
Cross-sectional
Not listed
Percentage of Participants and Caregivers Aware of Educational Material (EM)
EM includes home infusion guide, infusion diary, and safety and emergency plan.
Percentage of Participants and Caregivers who Understand the EM
EM includes home infusion guide, infusion diary, and safety and emergency plan.
Percentage of Participants and Caregivers who Utilize the EM
EM includes home infusion guide, infusion diary, and safety and emergency plan.
Percentage of Home Infusion Nurses Aware of the EM
EM includes home infusion guide, infusion diary, and safety and emergency plan.
Usefulness of the EM for Participants and Caregivers
EM includes home infusion guide, infusion diary, and safety and emergency plan. Usefulness will be assessed using the 12-item participant and caregiver questionnaire, and 15-item home infusion nurse questionnaire.
Usefulness of the EM for Home Infusion Nurses
EM includes home infusion guide, infusion diary, and safety and emergency plan. Usefulness will be assessed using the 12-item participant and caregiver questionnaire, and 15-item home infusion nurse questionnaire.
This trial is not recruiting at the moment. You can still explore other options:
