Rare diseases	Chronic diseases	Caregivers
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	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	1. They respect the lifestyle of the person I care for. The healthcare professionals who care for the person in my care ask me about their needs, habits and preferences to adapt their treatment and care plan
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	2. They are coordinated to offer me good care. The professionals who care for me at the health centre and those who care for me at the hospital talk to each other and coordinate to improve my wellbeing and quality of life	2. They are coordinated to offer us good care. The healthcare professionals who care for the person in my care at the health centre and those who care for them at the hospital talk to each other and coordinate to improve their wellbeing and quality of life and those of the family
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	3. They help me become informed via the Internet. The professionals who care for me inform me about reliable websites and Internet forums that I can consult to better understand my disease, its treatment and the consequences they may have on my life	3. They help me become informed via the Internet. The healthcare professionals who care for the person in my care inform me about websites and Internet forums that I can trust to better understand their disease, its treatment and the consequences they may have on their lives
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. 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. I now know how to look after them better. With the support of the healthcare and social professionals caring for the person in my care, I feel I have more confidence in my ability to take care of them, manage their health problems and approach their situation better
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. 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. They ask me about and help me follow the treatment plan of the person in my care. I review the adherence to their treatment and care plan with the healthcare professionals who care for the person in my care, and if I have questions, they answer them
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	6. We agree on objectives to lead a healthy life and to control my health problems better. I’ve been able to agree with the professionals who care for me on specific objectives regarding diet, physical exercise and medication to control my health problems better	6. We agree on the most important objectives of their care to control their health problems better. I’ve been able to discuss and agree with the healthcare professionals who care for the person in my care the most important health and social problems and how to manage them adequately to maintain their quality of life
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	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	–
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	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	7. They ensure that they take the medication correctly. The healthcare professionals caring for the person in my care review with me how to administer the medication and review with me if they are taking it correctly and how they are feeling
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	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	8. They are concerned about the wellbeing of the person in my care The healthcare and social care professionals who care for the person in my care are concerned about their quality of life and I feel they are committed to improving their wellbeing
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	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 and take better care of myself	11. They inform me about health and social resources that can help me. The healthcare and social care professionals who care for the person in my care inform me about the health and social resources available (in my neighbourhood, town or city) that I can use to improve the care I provide and to take better care of myself
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	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	12. They encourage me to talk to other caregiver. The healthcare and social care professionals who care for the person in my care encourage me to participate in caregiver groups to share information and experiences on how to care for ourselves and improve our competence as caregivers