Table 6 PREM IEXPAC rare-disease scores compared with the results of IEXPAC global scores replied by patients having other chronic conditions (“Appendix 2”)
Rare diseases | Chronic diseases (Orozco et al. [21]) | Caregivers (Guilabert et al.[22]) | ||||
|---|---|---|---|---|---|---|
Mean | % = 5+ | Mean | % = 5+ | Mean | % = 5+ | |
1. They respect my lifestyle | 5.1 | 2.8 | 8.3 | 56.5 | 7.8 | 45.5 |
2. They are coordinated to offer me good care | 3.4 | 3.2 | 7.1 | 43.0 | 7.5 | 43.0 |
3. They help me become informed via the Internet | 1.0 | 2.3 | 2.4 | 8.8 | 2.0 | 6.8 |
4. I now know how to look after myself better | 4.1 | 2.9 | 8.1 | 47.6 | 7.3 | 38.7 |
5. They ask me about and help me follow my treatment plan | 5.3 | 3.1 | 8.2 | 58.2 | 8.3 | 57.9 |
6. We agree on the most important objectives to a better manage of my disease | 4.3 | 3.1 | 7.4 | 46.9 | 7.5 | 45.5 |
7. I use the Internet and my mobile phone to consult my clinical record | 2.4 | 3.3 | 1.2 | 4.5 | - | - |
8. They ensure that I take my medication correctly | 4.9 | 3.6 | 7.8 | 59.1 | 8.3 | 68.1 |
9. They are concerned about my wellbeing | 5.1 | 3.3 | 8.5 | 65.6 | 8.3 | 60.0 |
10. They inform me about health and social resources that can help me | 1.8 | 2.6 | 5.1 | 27.0 | 6.3 | 34.0 |
11. They encourage me to talk with other patients | 1.2 | 2.3 | 2.6 | 9.0 | 3.5 | 18.7 |