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Table 5 IEXPAC global score, subsample population of women versus men

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

  Men Women p value
Mean (CI95%) SD % = 5+ Mean (CI95%) SD % = 5+
1. They respect my lifestyle 5.0 ± 0.4 2.9 12.3 5.6 ± 0.7 2.1 5.9 0.286
2. They are coordinated to offer me good care 3.3 ± 0.4 3.3 7.5 4.5 ± 0.9 2.7 2.9 0.041
3. They help me become informed via the Internet 0.9 ± 0.3 2.2 2.6 1.7 ± 0.9 2.6 2.9 0.059
4. I now know how to look after myself better 4.0 ± 0.4 3.0 7.0 5.2 ± 0.8 2.3 5.9 0.018
5. They ask me about and help me follow my treatment plan 5.2 ± 0.4 3.2 15.4 6.4 ± 0.8 2.3 14.7 0.028
6. We agree on the most important objectives to a better manage of my disease 4.2 ± 0.4 3.1 10.6 5.1 ± 0.9 2.6 5.9 0.132
7. I use the Internet and my mobile phone to consult my clinical record 2.1 ± 0.4 3.2 5.7 3.9 ± 1.2 3.7 11.8 0.004
8. They ensure that I take my medication correctly 4.7 ± 0.5 3.5 18.5 6.4 ± 1.2 3.5 38.2 0.010
9. They are concerned about my wellbeing 5.0 ± 0.4 3.3 18.1 5.9 ± 0.9 2.7 14.7 0.151
10. They inform me about health and social resources that can help me 1.6 ± 0.3 2.6 2.6 3.1 ± 0.9 2.7 0.0 0.002
11. They encourage me to talk with other patients 1.1 ± 0.3 2.2 0.9 2.2 ± 0.9 2.7 2.9 0.007
Overall IEXPAC score 3.4 ± 0.2 2.2   4.5 ± 0.5 1.6   0.001
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) 3.1 ± 0.6 3.8 14.2 4.5 ± 1.8 4.3 31.8 0.105
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) 0.6 ± 0.5 1.9 1.6 2.5 ± 2.2 3.5 10.0 0.012
14. The professionals who attend me have given me a telephone number where I can contact if I have an emergency (N = 153) 1.9 ± 0.5 3.2 9.5 2.8 ± 2.2 4.5 25.0 0.308
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) 3.4 ± 2.0 4.2 18.8 4.0 ± 2.5 2.9 0.0 0.783
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) 2.5 ± 1.2 3.3 10.3 2.8 ± 2.1 3.2 0.0 0.827
  1. Comparison of scores
  2. % = 5+ Percentage of subjects who answered with the always response option (score = 10)