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Table 3 Score IEXPAC scale, paediatric subsample and adults subsample

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

  Total sample (N = 261) Paediatric sample (N = 29) Adult sample (N = 232) p value
Mean (CI95%) SD % = 5+ Mean (CI95%) SD % = 5+ Mean (CI95%) SD % = 5+
1. They respect my lifestyle. The professionals who care for me listen to me and ask me about my needs, habits, and preferences to adapt my treatment and care plan 5.1 ± 0.3 2.8 11.5 6.6 ± 0.9 2.5 20.7 4.9 ± 0.4 2.8 10.3 0.002
2. They are coordinated to offer me good care. The professionals who care for me at the hospital, at the health center, and those who assisted me in my reference site talk to each other and coordinate to make sure that I receive diagnostic and coordinate to improve my wellbeing and quality of life 3.4 ± 0.4 3.2 6.9 5.2 ± 1.2 3.2 17.2 3.2 ± 0.4 3.2 5.6 0.002
3. They help me become informed via the Internet. The professionals who care for me inform me about reliable websited and Internet forums that I can consult to better understand my disease, its treatment, and the consequences that may have on my life 1.0 ± 0.3 2.3 2.7 2.0 ± 1.2 3.4 10.3 0.9 ± 0.3 2.1 1.7 0.014
4. I now know how to look after myself better. With the support of my professionals, I feel now that I have more confidence in my ability to take care of myself, manage my health problems and keep my autonomy 4.1 ± 0.3 2.9 6.9 5.3 ± 0.9 2.6 6.9 4.0 ± 0.4 2.9 6.9 0.016
5. They ask me about and help me follow my treatment plan. I review the adherence to my treatment and care plan with the professionals who care for me, and if I have questions, they answer them 5.3 ± 0.4 3.1 15.3 7.1 ± 0.9 2.4 24.1 5.1 ± 0.4 3.1 14.2 0.001
6. We agree on the most important objectives to a better manage of my disease. I have been able to agree with the professionals who care for me on which are the most important health and social problems and how to manage them properly to have the best quality of life 4.3 ± 0.4 3.1 10.0 6.9 ± 0.9 2.5 34.5 4.0 ± 0.4 3.0 6.9 0.001
7. I use the Internet and my mobile phone to consult my clinical record. I use the Internet and my mobile phone to consult my clinical record, test results, scheduled visits and to access other services on my health service’s website 2.4 ± 0.4 3.3 6.5 2.6 ± 1.3 3.5 10.3 2.3 ± 0.4 3.3 6.0 0.714
8. They ensure that I take my medication correctly. The professionals who care for me review with me all the medications I take, how I take them, how they make me feel, and I can ask them about the questions I have 4.9 ± 0.4 3.6 21.1 6.6 ± 1.4 3.7 44.8 4.7 ± 0.5 3.5 18.1 0.009
9. They are concerned about my wellbeing. The professionals who care for me are concerned with my quality of life and I feel they are committed to improving my wellbeing 5.1 ± 0.4 3.3 17.6 7.4 ± 1.0 2.6 41.4 4.8 ± 0.4 3.2 14.7 0.001
10. They inform me about health and social resources that can help me. The professionals who care for me inform me about the health and social resources available (in my neighbourhood, town or city) that I can use to improve my health problems 1.8 ± 0.3 2.6 2.3 3.5 ± 1.1 3.0 3.4 1.6 ± 0.3 2.5 2.2 0.001
11. They encourage me to talk with other patients. The professionals who care for me encourage me to participate in patients groups to share information and experiences on how to care for ourselves and improve our health 1.2 ± 0.3 2.3 1.1 3.3 ± 1.1 2.9 3.4 1.0 ± 0.3 2.0 0.9 0.001
Overall IEXPAC score 3.5 ± 0.6 2.2   5.1 ± 0.6 1.8   3.3 ± 0.2 1.9   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) 3.3 ± 0.5 3.9 16.4 5.9 ± 1.7 4.3 44.0 2.9 ± 0.6 3.6 11.8 0.001
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) 0.9 ± 0.5 2.3 2.7 1.4 ± 1.8 2.4 0.0 0.8 ± 0.5 2.2 3.0 0.483
14. The professionals who attend me have given me a telephone number where I can contact if I have an emergency (N = 153) 2.0 ± 1.6 3.4 11.1 4.1 ± 2.9 4.9 36.4 1.8 ± 0.5 3.2 9.2 0.032
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 ± 1.0 3.8 14.3 6.3 ± 7.4 5.3 50.0 3.3 ± 1.7 3.7 10.5 0.312
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) 2.6 ± 0.2 3.3 7.9 1.1 ± 1.5 2.0 0.0 2.9 ± 1.2 3.4 9.7 0.183
  1. Comparison of scores
  2. Score range 0 to 10
  3. % = 5+ Percentage of subjects who answered with the always response option (score = 10)