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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)