Protocol - Long COVID - Symptoms Due to COVID-19 - Neurology
Description
The Neurology module extracted from the Online Survey on Recovery from COVID-19 contains 14 items measuring symptom experiences as related to headaches, sense of smell and taste, tremors and vibrating sensations, other neurological sensations. Each symptom section asks for the presence of certain symptoms, when these symptoms began, and where symptoms are present.
Specific Instructions
None
Availability
Protocol
Headaches
1. Have you experienced any new HEADACHES OR RELATED ISSUES since the start of your COVID-19 illness?
[ ] Yes
[ ] No
2. Which of the following symptoms have you experienced since the start of your COVID-19 illness?
[ ] Headaches, at the base of the skull
[ ] Headaches, in the temples
[ ] Headaches, behind the eyes
[ ] Headaches, diffuse (entire brain)
[ ] Headaches/pain after mental exertion
[ ] Headaches, other: ______________
[ ] Sensation of brain warmth/"on fire"
[ ] Sensation of brain pressure
[ ] Migraines
[ ] Stiff neck
[ ] None of the above
3. When did you experience these symptoms?
Please mark symptoms for the first 4 weeks, then months (if applicable). Even if you have only experienced these symptoms for part of a week or month, please select it.
Week 1 | Week 2 | Week 3 | Week 4 | Month 2 | Month 3 | Month 4 | Month 5 | Month 6 | Month 7 | |
Headaches and related symptoms | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] |
Sense of Smell and Taste
4. Have you experienced any changes to your SENSE OF SMELL OR TASTE since the start of your COVID-19 illness?
[ ] Yes
[ ] No
5. Which of the following symptoms have you experienced since the start of your COVID-19 illness? *
[ ] Loss of smell
[ ] Phantom smells (imagining/hallucinating smells - smelling things that arent there)
[ ] Heightened sense of smell
[ ] Altered sense of smell
[ ] Loss of taste
[ ] Phantom taste (imagining/hallucinating tastes - tasting things when theres nothing in your mouth)
[ ] Heightened sense of taste
[ ] Altered sense of taste
[ ] None of the above
6. When did you experience these symptoms?
Please mark symptoms for the first 4 weeks, then months (if applicable). Even if you have only experienced these symptoms for part of a week or month, please select it.
Week 1 | Week 2 | Week 3 | Week 4 | Month 2 | Month 3 | Month 4 | Month 5 | Month 6 | Month 7 | |
Changes to sense of smell and taste | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] |
7. If you had phantom tastes, please describe them:
________________________________________________
8. If you had phantom smells, please describe them:
________________________________________________
Tremors and Vibrating Sensations
9. Have you experienced any TREMOR OR VIBRATION SENTATIONS since the start of your COVID-19 illness?
Tremor: Involuntary, rhythmic muscle contraction leading to shaking movements in one or more parts of the body
Vibration sensation: A buzzing feeling, when you feel like your muscles, fingers, or legs are vibrating or shaking inside, but you dont see the movement
[ ] Yes
[ ] No
10. Which of the following symptoms have you experienced since the start of your COVID-19 illness?
Please specify the location on your body in the text box. If multiple locations, please separate them with a comma (i.e. leg, torso, hand).
[ ] Tremors: ________________
[ ] Vibrating sensations: ________________
11. When did you experience these symptoms?
Please mark symptoms for the first 4 weeks, then months (if applicable). Even if you have only experienced these symptoms for part of a week or month, please select it.
N/A | Week 1 | Week 2 | Week 3 | Week 4 | Month 2 | Month 3 | Month 4 | Month 5 | Month 6 | Month 7 | |
Tremors | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] |
Vibrating sensations | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] |
12. Please use this space to describe examples of your tremors or body vibration/shaking during your illness.
Please do not include any identifying information (such as name or location).
________________________________________________
Weakness, numbness, tingling, coldness, and other sensations
13. Which of the following NEUROLOGICAL SENSATION SYMPTOMS have you experienced since the start of your COVID-19 illness, if any?
Please specify the location on your body in the text box. If multiple locations, please separate them with a comma (i.e. hand, leg, foot).
[ ] Skin sensations: burning, tingling, or itchiness without rash
[ ] Numbness/loss of sensation: ________________
[ ] Numbness/weakness on one side of the body only
[ ] Coldness: ________________
[ ] Tingling/prickling/pins and needles sensation: ________________
[ ] Electrical zaps/electrical shock sensation: ________________
[ ] Facial paralysis (please indicate where on face was paralyzed): ________________
[ ] Sensation of facial pressure/numbness, left side
[ ] Sensation of facial pressure/numbness, right side
[ ] Sensation of facial pressure/numbness, other: ________________
[ ] Weakness: ________________
[ ] None of the above
14. When did you experience these symptoms?
Please mark symptoms for the first 4 weeks, then months (if applicable). Even if you have only experienced these symptoms for part of a week or month, please select it.
N/A | Week 1 | Week 2 | Week 3 | Week 4 | Month 2 | Month 3 | Month 4 | Month 5 | Month 6 | Month 7 | |
All neurological sensations | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] |
Personnel and Training Required
None
Equipment Needs
None
Requirements
Requirement Category | Required |
---|---|
Major equipment | No |
Specialized training | No |
Specialized requirements for biospecimen collection | No |
Average time of greater than 15 minutes in an unaffected individual | No |
Mode of Administration
Self-administered questionnaire
Lifestage
Adult, Senior
Participants
Adults suffering COVID-19 or suspected COVID-19 infection symptoms for longer than 1 week.
Selection Rationale
The Neurology module extracted from the Online Survey on Recovery from COVID-19 is brief and easy to interpret. This protocol is also available in a wide variety of languages.
Language
English, Other languages available at source
Standards
Standard | Name | ID | Source |
---|
Derived Variables
None
Process and Review
Not applicable
Protocol Name from Source
Online Survey on Recovery from COVID-19
Source
Davis, H., Assaf, G., McCorkell, L., Wei, H., Low, R., Re'em, Y., & Akrami, A. (2021). Questionnaire to Characterize Long COVID: 200+ symptoms over 7 months (in 9 languages) (Version 4). figshare. https://doi.org/10.6084/m9.figshare.13642553.v4 (['http://patientresearchcovid19.com/'])
General References
None
Protocol ID
992003
Variables
Export VariablesVariable Name | Variable ID | Variable Description | dbGaP Mapping | |
---|---|---|---|---|
PX992003_Long_Covid_Symptoms_Neurology_Describe_Tremors_Vibration_Shaking | ||||
PX992003120000 | Please use this space to describe examples more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Experienced_Tremors_Location | ||||
PX992003100200 | Which of the following symptoms have you more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Experienced_Tremors_Vibrating_Sensations | ||||
PX992003100100 | Which of the following symptoms have you more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Experienced_Vibrating_Sensations_Location | ||||
PX992003100300 | Which of the following symptoms have you more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Experience_Headache_Symptoms | ||||
PX992003030000 | When did you experience these symptoms? more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Experience_Neurological_Sensations | ||||
PX992003140000 | When did you experience these symptoms? more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Experience_Smell_Taste_Symptoms | ||||
PX992003060000 | When did you experience these symptoms? more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Headaches_Related | ||||
PX992003010000 | Have you experienced any new HEADACHES OR more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Headaches_Symptoms | ||||
PX992003020000 | Which of the following symptoms have you more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Headaches_Symptoms_Other | ||||
PX992003020200 | Which of the following symptoms have you more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Neurological_Sensation_Symptoms | ||||
PX992003130100 | Which of the following NEUROLOGICAL more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Neurological_Sensation_Symptoms_Coldness_Location | ||||
PX992003130300 | Which of the following NEUROLOGICAL more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Neurological_Sensation_Symptoms_Electrical_Zaps_Location | ||||
PX992003130500 | Which of the following NEUROLOGICAL more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Neurological_Sensation_Symptoms_Facial_Paralysis_Location | ||||
PX992003130600 | Which of the following NEUROLOGICAL more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Neurological_Sensation_Symptoms_Facial_Pressure_Location | ||||
PX992003130700 | Which of the following NEUROLOGICAL more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Neurological_Sensation_Symptoms_Numbness_Location | ||||
PX992003130200 | Which of the following NEUROLOGICAL more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Neurological_Sensation_Symptoms_Tingling_Location | ||||
PX992003130400 | Which of the following NEUROLOGICAL more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Neurological_Sensation_Symptoms_Weakness_Location | ||||
PX992003130800 | Which of the following NEUROLOGICAL more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Phantom_Smells | ||||
PX992003080000 | If you had phantom smells, please describe them: | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Phantom_Taste | ||||
PX992003070000 | If you had phantom tastes, please describe them: | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Smell_Taste_Changes | ||||
PX992003040000 | Have you experienced any changes to your more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Smell_Taste_Symptoms | ||||
PX992003050000 | Which of the following symptoms have you more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_Tremor_Vibration_Sensations | ||||
PX992003090000 | Have you experienced any TREMOR OR VIBRATION more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_When_Experience_Symptoms_Tremors | ||||
PX992003110100 | When did you experience these symptoms? more | N/A | ||
PX992003_Long_Covid_Symptoms_Neurology_When_Experience_Symptoms_Vibrating_Sensations | ||||
PX992003110200 | When did you experience these symptoms? more | N/A |
Measure Name
Long COVID - Symptoms Due to COVID-19
Release Date
March 17, 2023
Definition
This is a measure of an individual’s new or continuing COVID-19 symptoms.
Purpose
Presence of lingering COVID-19 symptoms is a sign of Long COVID, and use of this measure helps with understanding people’s experience with COVID-19 and implications of Long COVID.
Keywords
University College London, UCL, COVID, long COVID, Neurology, symptoms, headache, sense of smell, sense of taste, tremors, vibrating sensation, weakness, numbness, tingling, coldness, neurological sensations
Measure Protocols
Publications
There are no publications listed for this protocol.