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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)