COVID-19 Survey for patients and caregivers We are trying to determine the impact of COVID19 on our patients with epilepsy, and their care. We would be grateful if you could complete the following questions. For person completing this survey: Question Title * 1. Are you? A person with epilepsy A parent / carer of a person with epilepsy Question Title * 2. In what country do you live? Afghanistan Albania Algeria Andorra Angola Anguilla Antigua and Barbuda Argentina Armenia Australia Austria Azerbaijan Bahamas Bahrain Bangladesh Barbados Belarus Belgium Belize Benin Bhutan Bolivia (Plurinational State of) Bosnia and Herzegovina Botswana Brazil British Virgin Island Brunei Darussalam Bulgaria Burkina Faso Burundi Cabo Verde Cambodia Cameroon Canada Cayman Islands Central African Republic Chad Chile China Colombia Comoros Congo Costa Rica Côte D'Ivoire Croatia Cuba Cyprus Czech Republic Democratic People's Republic of Korea Democratic Republic of the Congo Denmark Djibouti Dominica Dominican Republic Ecuador Egypt El Salvador Equatorial Guinea Eritrea Estonia Ethiopia Fiji Finland France Gabon Gambia Georgia Germany Ghana Greece Grenada Guatemala Guinea Guinea Bissau Guyana Haiti Holy See Honduras Hungary Iceland India Indonesia Iran (Islamic Republic of) Iraq Ireland Israel Italy Jamaica Japan Jordan Kazakhstan Kenya Kiribati Kuwait Kyrgyzstan Lao People’s Democratic Republic Latvia Lebanon Lesotho Liberia Libya Liechtenstein Lithuania Luxembourg Madagascar Malawi Malaysia Maldives Mali Malta Marshall Islands Mauritania Mauritius Mexico Micronesia (Federated States of) Monaco Mongolia Montenegro Montserrat Morocco Mozambique Myanmar Namibia Nauru Nepal Netherlands New Zealand Nicaragua Niger Nigeria Norway Oman Pakistan Palau Panama Papua New Guinea Paraguay Peru Philippines Poland Portugal Qatar Republic of Korea Republic of Moldova Romania Russian Federation Rwanda Saint Kitts and Nevis Saint Lucia Saint Vincent and the Grenadines Samoa San Marino Sao Tome and Principe Saudi Arabia Senegal Serbia Seychelles Sierra Leone Singapore Slovakia Slovenia Solomon Islands Somalia South Africa South Sudan Spain Sri Lanka State of Palestine Sudan Suriname Swaziland Sweden Switzerland Syrian Arab Republic Tajikistan Thailand The former Yugoslav Republic of Macedonia Timor-Leste Togo Tonga Trinidad and Tobago Tunisia Turkey Turkmenistan Turks and Caicos Tuvalu Uganda Ukraine United Arab Emirates United Kingdom of Great Britain and Northern Ireland United Republic of Tanzania United States of America Uruguay Uzbekistan Vanuatu Venezuela (Bolivarian Republic of) Vietnam Yemen Zambia Zimbabwe You/person with epilepsy during the COVID-19 crisis Question Title * 3. Have you/your child or another member of your household been diagnosed with COVID-19? Me My child/person I look after Household member Yes, tested positive Yes, tested positive Me Yes, tested positive My child/person I look after Yes, tested positive Household member Presumably yes (fever, dry cough, shortness of breath, diarrhea or other COVID like symptoms and positive chest xray/CT) Presumably yes (fever, dry cough, shortness of breath, diarrhea or other COVID like symptoms and positive chest xray/CT) Me Presumably yes (fever, dry cough, shortness of breath, diarrhea or other COVID like symptoms and positive chest xray/CT) My child/person I look after Presumably yes (fever, dry cough, shortness of breath, diarrhea or other COVID like symptoms and positive chest xray/CT) Household member Possibly yes (fever, dry cough, shortness of breath, diarrhea or other COVID like symptoms but no tests done) Possibly yes (fever, dry cough, shortness of breath, diarrhea or other COVID like symptoms but no tests done) Me Possibly yes (fever, dry cough, shortness of breath, diarrhea or other COVID like symptoms but no tests done) My child/person I look after Possibly yes (fever, dry cough, shortness of breath, diarrhea or other COVID like symptoms but no tests done) Household member Question Title * 4. Has the seizure frequency changed for you/or person with epilepsy during the COVID-19 period? No Yes, increased Yes, decreased Question Title * 5. Have you/or person living with epilepsy had difficulty obtaining medication? Yes No Question Title * 6. Have you/or person living with epilepsy had difficulty accessing your epilepsy health care professionals or support team during the COVID-19 period? Yes No Not applicable Please provide specifics For persons with epilepsy: The following questions ask about how you have been feeling during the past 30 days. For each question, please check the number that best describes how often you had this feeling. Question Title * 7. Your wellbeing during the COVID-19 crisis.During the last 30 days, about how often did you feel... All of the time Most of the time Some of the time A little of the time None of the time ... nervous? ... nervous? All of the time ... nervous? Most of the time ... nervous? Some of the time ... nervous? A little of the time ... nervous? None of the time ... hopeless? ... hopeless? All of the time ... hopeless? Most of the time ... hopeless? Some of the time ... hopeless? A little of the time ... hopeless? None of the time ... restless or fidgety? ... restless or fidgety? All of the time ... restless or fidgety? Most of the time ... restless or fidgety? Some of the time ... restless or fidgety? A little of the time ... restless or fidgety? None of the time ... so depressed that nothing could cheer you up? ... so depressed that nothing could cheer you up? All of the time ... so depressed that nothing could cheer you up? Most of the time ... so depressed that nothing could cheer you up? Some of the time ... so depressed that nothing could cheer you up? A little of the time ... so depressed that nothing could cheer you up? None of the time ... that everything was an effort? ... that everything was an effort? All of the time ... that everything was an effort? Most of the time ... that everything was an effort? Some of the time ... that everything was an effort? A little of the time ... that everything was an effort? None of the time ... worthless? ... worthless? All of the time ... worthless? Most of the time ... worthless? Some of the time ... worthless? A little of the time ... worthless? None of the time Question Title * 8. In relation to Covid-19, please let us know if any of the following are causing you anxiety at the current time? A lot of anxiety A little anxiety No anxiety Worry about getting COVID-19 Worry about getting COVID-19 A lot of anxiety Worry about getting COVID-19 A little anxiety Worry about getting COVID-19 No anxiety Worry about having to self-isolate with epilepsy Worry about having to self-isolate with epilepsy A lot of anxiety Worry about having to self-isolate with epilepsy A little anxiety Worry about having to self-isolate with epilepsy No anxiety Interruption to family or social life / isolation Interruption to family or social life / isolation A lot of anxiety Interruption to family or social life / isolation A little anxiety Interruption to family or social life / isolation No anxiety Worry about seizures worsening/ recurring Worry about seizures worsening/ recurring A lot of anxiety Worry about seizures worsening/ recurring A little anxiety Worry about seizures worsening/ recurring No anxiety Worry about financial/ employment matters Worry about financial/ employment matters A lot of anxiety Worry about financial/ employment matters A little anxiety Worry about financial/ employment matters No anxiety Lifestyle changes (not getting enough sleep, exercise; poor diet or difficulty getting food) Lifestyle changes (not getting enough sleep, exercise; poor diet or difficulty getting food) A lot of anxiety Lifestyle changes (not getting enough sleep, exercise; poor diet or difficulty getting food) A little anxiety Lifestyle changes (not getting enough sleep, exercise; poor diet or difficulty getting food) No anxiety Caring for others Caring for others A lot of anxiety Caring for others A little anxiety Caring for others No anxiety Other (please specify) Question Title * 9. Is there specific information/support you feel you need at this time? Online self-management programs Psychological support Home delivery of medication Access to alarms or seizure detection devices Access to food Receive epilepsy medical advice and support by phone, or by tele/video visit Trustworthy and up-to-date information about epilepsy and COVID-19 Other (please specify) Done