Table 1 Study outcomes at both sites
From: 10th European Conference on Rare Diseases & Orphan Products (ECRD 2020)
Priorities for improvement | Â | Quality improvement interventions |
|---|---|---|
UK Site | ||
a. Communication at the point of testing |
| 1. Principles and recommendation to improve communication with families 2. Use of film for workforce engagement and professional development (on-going) |
b. Named person for follow up and questions |
| 3. Job description: Liaison Officer for rare/undiagnosed diseases |
Czech Site | ||
a. Follow-up care |
| 1. Follow up appointment within 1Â month |
b. Prevention of feeling of guilt |
| 2. Workshop on families’ experience of guilt and (self-)blame 3. Educational resources at the Department 4. Referral pathways for families in need of specialist psychosocial support (on-going) |
c. Environment of the Department |
| 5. Environmental improvements (on-going) |
