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* 1. While the lessons learned from this questionnaire may not benefit you directly, the results will help the EHA to better understand how HD patients and family members experience access to health care and social services.

Clicking on the "Agree" button below indicates that:

- You voluntarily agree to participate in this questionnaire

- You are at least 18 years of age

- You confirm that you have not filled in this questionnaire previously

-You confirm that you respond on behalf of your own access and need for healht care and social care support, exept from question 18 about late stage care.

- You agree that your responses will be used anonymously by the EHA for the purposes of understanding the current situation and the access to healthcare and social services in Europe for HD patients and family members.

Thank you for participating in this questionnaire!

Your feedback is really important to us!


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* 3. What is your gender?

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* 4. What is your age?

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* 6. What is your status regarding Huntington's Disease (HD)?

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* 7. If you have done genetic test for Huntington's Disease, did you receive counselling before being tested?

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* 8. If you didnt get counselling in relation to doing a genetic test for HD, why not?

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* 9. If you have done genetic test for HD, did you receive counselling after having the result?

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* 10. If you have received counselling in relation to a genetic test for HD,  how helpful was this for you?

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* 11. Which health care or social care professionals have you been seeing in relation to Huntington's Disease? (tick as many as apply)

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* 12. How often do you see your health care or social service professional/s?

  4 or more times a year 1 -3 times a year I have had only 1 consultation Other frequency during a spesific period of time (a spesific treatment, counselling etc) None
General Practioner
Neurologist
Geneticist
Genetic counsellor
Pshyciatrist
Psychologist
Physioterapist
Occupational therapist
Speech and language therapist
Dietitian
Nurse
Social worker
Other

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* 13. Are you happy with the frequency you see your health care professional or social worker? (skip the professionals you don't see)

  Yes, it's sufficient No, I would like consult more often
General Practitioner
Neurologist
Geneticist
Genetic counsellor
Pshyciatrist
Psychologist
Physioterapist
Occupational therapist
Speech and language therapist
Dietitian
Nurse
Social worker
Other

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* 14. How useful is the contact with your health care or social service professional/s for you? (Skip the professionals you don't see)

  Very useful Quite useful Somewhat useful Not useful
General Practioner
Neurologist
Geneticist
Genetic counsellor
Pshyciatrist
Psychologist
Physioterapist
Occupational therapist
Speech and language therapist
Dietitian
Nurse
Social worker
Other

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* 15. Are the services you make use of affordable for you? (Skip the professionals you don't see)

  There are no costs for me It's affordable It's expensive but I manage to cover it It's too expensive and I can't make use of the service because of the costs
General Practitioner
Neurologist
Geneticist
Genetic Counsellor
Pshyciatrist
Psychologist
Physioterapist
Occupational therapist
Speech and language therapist
Dietitian
Nurse
Social worker
Other

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* 16. What kind of support or services, that you don't have access to now, would you like have?

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* 17. If you are missing support and help from health care or social care service. What are the main reasons for not getting what you need?

  Main reason A quite important reason Part of the reason Small part of the reason Not a reason
I don't get support because the service is not existing
I don't get support because of geographical distance
I don't get support because of long waiting lists
I don't get support because of the costs
It's difficult to know where to turn to and ask for help
I don't have the strength and capacity to find out where and how to get the help I need.
It is hard to obtain understanding for my needs (professionals don't understand what HD is)
I don't want to be a burden on the system - I can manage without help although it would be good to have support
I can't find someone with expertise in Huntington’s Disease
I don't want to talk with anyone about Huntington’s Disease

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* 18. For a patient in the late stages of Huntingtons disease and needing full time care, how is the care provided?

  Very common solution Quite common solution Not very common solution Only for a minority of patients Not available
Patients has to be taken care of by relatives in their own home
Patients go to a public care home with elderly patients
Patients usually go to a private care home for all kind of elderly patients
Patients can go to a public specialised care home for Huntington patients
Patients can go to a private specialised care home for Huntington patients
Patients are offered public home services with equipment, nurses, physiotherapy or others as needed
Patients can pay for private services at home based on their needs
Patients are offered some of basic public home services needed

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* 19. Anything else you want us to know about access to care and support for people affected by Huntingtons Disease in your community?

0 of 19 answered
 

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