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Table 4 IEXPAC global score, subsample of the population attended at the health center versus the population attended at the hospital

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

  Health Center (N = 80) Hospital (N = 181) p value
Mean (CI95%) SD % = 5+ Mean (CI95%) SD % = 5+
1. They respect my lifestyle 4.4 ± 0.6 2.7 6.3 5.4 ± 0.4 2.8 13.8 0.005
2. They are coordinated to offer me good care 2.8 ± 0.7 3.0 6.3 3.7 ± 0.5 3.3 7.2 0.036
3. They help me become informed via the Internet 0.7 ± 0.4 1.9 1.3 1.1 ± 0.4 2.4 3.3 0.196
4. I now know how to look after myself better 3.7 ± 0.6 3.0 8.8 4.3 ± 0.4 2.8 6.1 0.102
5. They ask me about and help me follow my treatment plan 4.7 ± 0.7 3.2 13.8 5.6 ± 0.4 3.0 16.0 0.021
6. We agree on the most important objectives to a better manage of my disease 3.8 ± 0.7 3.1 10.0 4.6 ± 0.4 3.1 9.9 0.072
7. I use the Internet and my mobile phone to consult my clinical record 2.3 ± 0.7 3.2 3.8 2.4 ± 0.5 3.3 7.7 0.758
8. They ensure that I take my medication correctly 4.5 ± 0.7 3.2 13.8 5.1 ± 0.5 3.7 24.3 0.172
9. They are concerned about my wellbeing 4.2 ± 0.6 3.0 7.5 5.6 ± 0.5 3.3 22.1 0.001
10. They inform me about health and social resources that can help me 1.4 ± 0.5 2.3 1.3 2.0 ± 0.4 2.7 2.8 0.081
11. They encourage me to talk with other patients 1.1 ± 0.5 2.1 1.3 1.3 ± 0.3 2.3 11.1 0.413
Overall IEXPAC score 3.0 ± 0.4 1.9   3.7 ± 0.3 2.0   0.08
12. My Health Service has identified a specialized center where I can be diagnosed and helped with my illness, to refer me there (N = 177) 2.7 ± 0.9 3.5 10.9 3.6 ± 0.7 4.0 18.9 0.161
13. After being discharged from hospital, they have called or visited me at home to see how I was and what care I needed (N = 73) 1.2 ± 1.4 3.2 10.5 0.7 ± 0.5 1.9 0.0 0.464
14. The professionals who attend me have given me a telephone number where I can contact if I have an emergency (N = 153) 1.7 ± 0.9 3.2 9.8 2.1 ± 0.7 3.5 11.8 0.475
15. The professionals who care for me in my home try to solve my health problems in coordination with the professionals of the health center and the hospital (N = 21) 3.6 ± 2.1 3.6 9.1 3.5 ± 2.6 4.3 20.0 0.938
16. The professionals who care for me in social services talk to and coordinate with the healthcare professionals to provide me with good care (N = 38) 2.7 ± 1.9 3.5 7.7 2.5 ± 1.3 3.2 8.0 0.866
  1. Comparison of scores
  2. % = 5+ Percentage of subjects who answered with the always response option (score = 10)