For family members: Survey about access to health care and social support services for HD family members in Europe

Question Title

* 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!

Agree

Disagree

Question Title

* 2. In what country do you live?

Question Title

* 3. What is your gender?

Female

Male

Other

Question Title

* 4. What is your age?

18 to 24

25 to 34

35 to 44

45 to 54

55 to 64

65 to 74

75 or older

Question Title

* 5. What is the highest level of education you have completed?

Question Title

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

I am gene positive (You have tested positive in the presymptomatic genetic test for Huntington's Disease)

I am gene negative (You have tested negative in the genetic test for Huntington’s Disease and do not carry the HD mutation)

I am at risk (You do not know if you carry the genetic mutation of Huntington's Disease or not) After ticking this category, skip question 7,8,9and 10 as these will not apply to you.

I am gene positive and symptomatic (You have tested positive in the genetic test for Huntington's disease and you have symptoms of the disease)

I am diagnosed with Huntington’s Disease, but have not done a genetic test. After ticking this category, skip question 7,8,9and 10 as these will not apply to you.

I am a family member (you are the partner/spouse/co-living with someone affected by HD) After ticking this category, skip question 7,8,9and 10 as these will not apply to you.

Question Title

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

Yes

Question Title

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

It wasn't offered to me

I could choose to not go to counselling

There is no counselling availble when you do a genetic test at my hospital

Other (please specify)

Question Title

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

Yes

Question Title

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

Of critical value and enabled me to be well prepared for the result

Very good and helpful for me

OK and somewhat helpful for me

Of little help

Of poor quality and not helpful

Anything you want to add?

Question Title

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

General Practitioner

Neurologist

Geneticist

senetic counsellor

Psychologist

Psychiatrist

Physiotherapist

Occupational therapist

Speech and language therapist

Nurse

Dietitian

Social worker

Other

Comments

Question Title

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

Comments

Question Title

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

Question Title

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

Comments

Question Title

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

Comments

Question Title

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

Psychological support - someone to talk to about my thoughts and concerns related to Huntington's Disease

Help to coordinate and get access to services needed

Social support - someone who can help me get the practical support and arrangements me and my family needs

Genetic test and counselling

Practical help in my house

HD Symptom management (whatever they are - movement, psychiatric problems, anxiety, sleep etc etc)

More contact with peers (for instance an HD assciation)

Other

Is there anything you want to add?

Question Title

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

Comments

Question Title

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

Other (please specify)

For family members: Survey about access to health care and social support services for HD family members in Europe

Question Title

Question Title

* 2. In what country do you live?

Question Title

* 3. What is your gender?

Question Title

* 4. What is your age?

Question Title

* 5. What is the highest level of education you have completed?

Question Title

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

Question Title

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

Question Title

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

Question Title

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

Question Title

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

Question Title

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

Question Title

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

Question Title

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

Question Title

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

Question Title

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

Question Title

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

Question Title

* 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?

Question Title

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

Question Title

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