Items included in the PREM-IEXPAC-rare-diseases instrument
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	0.86
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	0.85
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	0.81
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	0.80
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	0.72
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	0.72
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	0.69
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		0.76
3. They help me become informed via the Internet. The professionals who care for me inform me about reliable websited and Internet fórums that I can consult to better understand my disease, its treatment, and the consequences that may have on my life		0.65
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		0.63
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		0.55
Percentage of variance explained	41.9	17.4
Cronbach's Alpha	0.90	0.58