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Table 6 PREM IEXPAC rare-disease scores compared with the results of IEXPAC global scores replied by patients having other chronic conditions (“Appendix 2”)

From: Results of a Patient Reported Experience Measure (PREM) to measure the rare disease patients and caregivers experience: a Spanish cross-sectional study

  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
  1. % = 5+ Percentage of subjects who answered with the always response option (score = 10)