Table 1.

The HD survey (English translation) on the impact of COVID-19 pandemic on patients with Huntington's disease and their caregivers in the Auvergne-Rhone Alpes region.

Section I: General information

1)Who is the person completing the survey? (The patient - The caregiver - Both)

2)How old are you? (Select the numbers of years)

3)Are you a man or a woman? (Man – Woman)

4)Where do you live? (At home alone – At home with family- Institution)

Section II: Medical information about HD and COVID-19 disease

1)Do you have any HD symptoms? (Yes – No)

2)How many years have you had HD symptoms? (Select the numbers of years)

3)Do you need help in daily life activities? (No help – Help for some activities – Completely dependent)

4)Did you have a diagnosis of COVID-19? (Yes – No) If Yes, how was the diagnosis confirmed? (Swab – Serological test - Both) If Yes, have you been hospitalized? (Yes – No) If Yes, how did the COVID-19 change your HD symptoms? (No change – Worsening of symptoms – New symptoms onset) If Yes, did you experience a social isolation? (Yes – No)

5)Did the global health crisis due to the first wave of COVID-19 modify your HD symptoms during the three following months? (Yes, I had a worsening of my usual symptoms – Yes, I had new symptoms- No change) If Yes, I had a worsening of my usual symptoms: which ones? (Select the text, more than one answer is possible) If Yes, I had new symptoms: which ones? (Select the text, more than one answer is possible)

6)Did you need to change your medical treatment during the first wave of pandemic and the three following months? (Yes, I needed to increase the daily dose and/or the frequency of one or more medications – Yes, I needed to add one or more new medications- No change)

Section III: The impact of COVID-19 on overall standard care of patients with HD and on their caregivers

1)Did you experience any problem in the standard care of your HD during the first pandemic and the three following months? (Yes – No) If Yes, which are the problems identified? (Select the text, more than one answer is possible)

2)During the pandemic, was the standard neurological follow-up realized? Yes, by in-person visits- Yes, by phone calls- Yes, by virtual meetings- Not realized at all (more than one answer is possible).

3)Did you need a psychological follow-up during and after the first pandemic? (Yes – No) If Yes, how was it possible? (By in-person visits- By phone calls- By virtual meetings- Not possible)

4)Did you need to increase or start a psychological follow-up during and after the pandemic? (Yes – No) If Yes, was it possible? (Yes – No)

5)Do you think that the difficulties in the management of your HD during and after the pandemic negatively impacted your caregiver(s) and/or your family? (Yes – No)

6)Do you think that the overall management of your HD was appropriate during and after the pandemic? (Yes – No) If No, how do you think it could be improved in the future? (Select the text, more than one answer is possible)