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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 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. For how long have you been working with people affected by HD? (Being a patient, pre-symptomatic, at-risk or relative/close to someone with HD)

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* 4. How many people affected by HD (as described in the previous question) do you see in the timeframe of one year?

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* 5. What is your profession?

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* 6. Do you offer public or private services?

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* 7. In your own opinion how good is your expertise in HD (related to the patients you serve)?

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* 8. Are you able to provide consultations/treatment at the frequency you regard as fit to meet the needs of the patient?

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* 9. Based on your best knowledge and evaluation how easy can HD patients and family members access health care and social services they need?

  Easy accessible for all Quite easy accessible Accessible, but long waiting time for consultations Accessible for the most urgent and needy cases Very limited access Not available I don't know
Genetic test for HD
Counselling in relation to undergo genetic test for HD
Neurologist
Psychiatric support and treatment
Psychological support
Physiotherapy
Occupational therapy
Speech and language therapy
Dietary advise and support
Social services
Other

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* 10. Based on your best knowledge and evaluation how costly are the services avialable for HD patients and family members?

  No cost for patients Affordable to patients Expensive, but possible to manage for patients It's very expensive and only a few can afford it I don't know
Genetic test for HD
Counselling in relation to undergo genetic test for HD
Neurologist
Psychiatric support and treatment
Psychological support
Physiotheraphy
Occupational theraphy
Speech and language theraphy
Dietary advise and support
Social services
Other

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* 11. Based on your best knowledge and experience, what are the main reasons for HD patients and family members don't get access to services they need?

  Main reason A quite important reason Part of the reason Small part of the reason Not a reason
Non existing
Geographical distance
Long waiting lists
Costs
It's difficult to know where to turn to and ask for help
They don't have the strength and capacity to find out where and how to get the help I need.
They find it hard to obtain understanding for their needs (many professionals don't understand what HD is)
They don't want to be a burden on the system
They can't find someone with expertise in Huntington’s Disease
They don't want to talk with anyone about Huntington’s Disease

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* 12. Based on your best knowledge and experience what kind of services are the most important ones for HD patients and family members?

  Very important Important Of some importance Not very important Not important I don't know
Coordination and help to get access to services needed
Psychological support - someone to talk to about their thoughts and concerns related to Huntington's Disease
Genetic counselling
Social support - someone who can help get the practical support and arrangements the patient and/or the family members need
Practical help in the house
HD Symptom management (whatever they are - movement, psychiatric problems, anxiety, sleep etc etc)
Peer support (contact with others in the same situation for instance an HD association)
Other

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* 13. In your opinion how important is it for the clinicians to have specific knowlegde in HD when providing services to an HD patient or family member?

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* 14. Based on your best knowledge and experience how is care provided for a patient in the late stages of Huntingtons disease and needing full time care?

  Very common solution Quite common solution Not very common solution Only for a minority of patients Not avialable I don't know
Patients usually go to a private care home for elderly patients
Patients can go to a public specialized care home for Huntington patients
Patients can go to a private specialized 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
Patients are offered some basic public home services

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

0 of 15 answered
 

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