Protocol - Long COVID - Symptoms Due to COVID-19 - Cardiovascular Symptom Course
Description
A self-administered questionnaire to better describe and understand the patient experience and recovery of those with confirmed or suspected COVID-19, with a specific emphasis on Long COVID experience especially with heavy limbs, heart rate, temperature regulation and dizziness.
Specific Instructions
None
Availability
This protocol is freely available; permission not required for use.
Protocol
1a. Do you still have the heavy limbs?
[ ] Yes, I still have this symptom
[ ] Yes, I still have the symptom but it is less severe
[ ] Yes, I still have the symptom but it comes and goes
[ ] No, the symptom has cleared
1b. Does/did the heavy limbs affect your ability to do your normal activities?
[ ] I have/had the symptom but I can/could still do normal activities.
[ ] The symptom really bothers/bothered me. It is/was hard to do normal activities.
[ ] The symptom is/was very bad. I am/was not able to do activities that I usually do.
[ ] Refuse to answer
1c. When did the heavy limbs clear?
[ ] Less than 3 months after symptom started
[ ] Between 3 to 6 months after symptom started
[ ] Between 6 to 9 months after symptom started
[ ] Greater than 9 months after symptom started
[ ] Don't know
[ ] Refuse to answer
2a. Do you still have the rapid heart rate?
[ ] Yes, I still have this symptom
[ ] Yes, I still have the symptom but it is less severe
[ ] Yes, I still have the symptom but it comes and goes
[ ] No, the symptom has cleared
2b. Does/did the rapid heart rate affect your ability to do your normal activities?
[ ] I have/had the symptom but I can/could still do normal activities.
[ ] The symptom really bothers/bothered me. It is/was hard to do normal activities.
[ ] The symptom is/was very bad. I am/was not able to do activities that I usually do.
[ ] Refuse to answer
2c. When did the rapid heart rate clear?
[ ] Less than 3 months after symptom started
[ ] Between 3 to 6 months after symptom started
[ ] Between 6 to 9 months after symptom started
[ ] Greater than 9 months after symptom started
[ ] Don't know
[ ] Refuse to answer
3a. Do you still have the slow heart rate?
[ ] Yes, I still have this symptom
[ ] Yes, I still have the symptom but it is less severe
[ ] Yes, I still have the symptom but it comes and goes
[ ] No, the symptom has cleared
3b. Does/did the slow heart rate affect your ability to do your normal activities?
[ ] I have/had the symptom but I can/could still do normal activities.
[ ] The symptom really bothers/bothered me. It is/was hard to do normal activities.
[ ] The symptom is/was very bad. I am/was not able to do activities that I usually do.
[ ] Refuse to answer
3c. When did the slow heart rate clear?
[ ] Less than 3 months after symptom started
[ ] Between 3 to 6 months after symptom started
[ ] Between 6 to 9 months after symptom started
[ ] Greater than 9 months after symptom started
[ ] Don't know
[ ] Refuse to answer
4a. Do you still have chills/repeated shaking with chills?
[ ] Yes, I still have this symptom
[ ] Yes, I still have the symptom but it is less severe
[ ] Yes, I still have the symptom but it comes and goes
[ ] No, the symptom has cleared
4b. Does/did the chills/repeated shaking with chills affect your ability to do your normal activities?
[ ] I have/had the symptom but I can/could still do normal activities.
[ ] The symptom really bothers/bothered me. It is/was hard to do normal activities.
[ ] The symptom is/was very bad. I am/was not able to do activities that I usually do.
[ ] Refuse to answer
4c. When did the chills/repeated shaking with chills clear?
[ ] Less than 3 months after symptom started
[ ] Between 3 to 6 months after symptom started
[ ] Between 6 to 9 months after symptom started
[ ] Greater than 9 months after symptom started
[ ] Don't know
[ ] Refuse to answer
5a. Do you still always feel hot or cold (temperature dysregulation)?
[ ] Yes, I still have this symptom
[ ] Yes, I still have the symptom but it is less severe
[ ] Yes, I still have the symptom but it comes and goes
[ ] No, the symptom has cleared
5b. Does/did the always feeling hot or cold (temperature dysregulation) affect your ability to do your normal activities?
[ ] I have/had the symptom but I can/could still do normal activities.
[ ] The symptom really bothers/bothered me. It is/was hard to do normal activities.
[ ] The symptom is/was very bad. I am/was not able to do activities that I usually do.
[ ] Refuse to answer
5c. When did the always feeling hot or cold (temperature dysregulation) clear?
[ ] Less than 3 months after symptom started
[ ] Between 3 to 6 months after symptom started
[ ] Between 6 to 9 months after symptom started
[ ] Greater than 9 months after symptom started
[ ] Don't know
[ ] Refuse to answer
6a. Do you still feel dizzy or lightheaded when standing up after sitting (orthostatic hypotension)?
[ ] Yes, I still have this symptom
[ ] Yes, I still have the symptom but it is less severe
[ ] Yes, I still have the symptom but it comes and goes
[ ] No, the symptom has cleared
6b. Does/did the feeling dizzy or lightheaded when standing up after sitting (orthostatic hypotension) affect your ability to do your normal activities?
[ ] I have/had the symptom but I can/could still do normal activities.
[ ] The symptom really bothers/bothered me. It is/was hard to do normal activities.
[ ] The symptom is/was very bad. I am/was not able to do activities that I usually do.
[ ] Refuse to answer
6c. When did the feeling dizzy or lightheaded when standing up after sitting (orthostatic hypotension) clear?
[ ] Less than 3 months after symptom started
[ ] Between 3 to 6 months after symptom started
[ ] Between 6 to 9 months after symptom started
[ ] Greater than 9 months after symptom started
[ ] Don't know
[ ] Refuse to answer
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 aged 18 years or older
Selection Rationale
PhenX used input from the PhenX Steering Committee to enable rapid response and release of COVID-19 related protocols in the Toolkit.
Language
English
Standards
| Standard | Name | ID | Source |
|---|
Derived Variables
None
Process and Review
N/A
Protocol Name from Source
Johns Hopkins COVID Long Study
Source
Johns Hopkins Bloomberg School of Public Health. (2022). Johns Hopkins COVID Long Study, Section “COVID-19: Symptoms”, questions on heavy limbs, rapid heart rate; slow heart rate; chills/repeated shaking with chills; temperature dysregulation; orthostatic hypotension.
General References
NoneProtocol ID
992009
Variables
Export Variables| Variable Name | Variable ID | Variable Description | dbGaP Mapping | |
|---|---|---|---|---|
| PX992009_Long_COVID_Symptoms_Cardiovascular_Chills | ||||
| PX992009040100 | Do you still have chills/repeated shaking more | N/A | ||
| PX992009_Long_COVID_Symptoms_Cardiovascular_Chills_Clear | ||||
| PX992009040300 | When did the chills/repeated shaking with more | N/A | ||
| PX992009_Long_COVID_Symptoms_Cardiovascular_Chills_Normal_Activities | ||||
| PX992009040200 | Does/did the chills/repeated shaking with more | N/A | ||
| PX992009_Long_COVID_Symptoms_Cardiovascular_Heavy_Limbs | ||||
| PX992009010100 | Do you still have the heavy limbs? | N/A | ||
| PX992009_Long_COVID_Symptoms_Cardiovascular_Heavy_Limbs_Clear | ||||
| PX992009010300 | When did the heavy limbs clear? | N/A | ||
| PX992009_Long_COVID_Symptoms_Cardiovascular_Heavy_Limbs_Normal_Activities | ||||
| PX992009010200 | Does/did the heavy limbs affect your ability more | N/A | ||
| PX992009_Long_COVID_Symptoms_Cardiovascular_Orthostatic_Hypotension | ||||
| PX992009060100 | Do you still feel dizzy or lightheaded when more | N/A | ||
| PX992009_Long_COVID_Symptoms_Cardiovascular_Orthostatic_Hypotension_Clear | ||||
| PX992009060300 | When did the feeling dizzy or lightheaded more | N/A | ||
| PX992009_Long_COVID_Symptoms_Cardiovascular_Orthostatic_Hypotension_Normal_Activities | ||||
| PX992009060200 | Does/did the feeling dizzy or lightheaded more | N/A | ||
| PX992009_Long_COVID_Symptoms_Cardiovascular_Rapid_Heart_Rate | ||||
| PX992009020100 | Do you still have the rapid heart rate? | N/A | ||
| PX992009_Long_COVID_Symptoms_Cardiovascular_Rapid_Heart_Rate_Clear | ||||
| PX992009020300 | When did the rapid heart rate clear? | N/A | ||
| PX992009_Long_COVID_Symptoms_Cardiovascular_Rapid_Heart_Rate_Normal_Activities | ||||
| PX992009020200 | Does/did the rapid heart rate affect your more | N/A | ||
| PX992009_Long_COVID_Symptoms_Cardiovascular_Slow_Heart_Rate | ||||
| PX992009030100 | Do you still have the slow heart rate? | N/A | ||
| PX992009_Long_COVID_Symptoms_Cardiovascular_Slow_Heart_Rate_Clear | ||||
| PX992009030300 | When did the slow heart rate clear? | N/A | ||
| PX992009_Long_COVID_Symptoms_Cardiovascular_Slow_Heart_Rate_Normal_Activities | ||||
| PX992009030200 | Does/did the slow heart rate affect your more | N/A | ||
| PX992009_Long_COVID_Symptoms_Cardiovascular_Temperature_Dysregulation | ||||
| PX992009050100 | Do you still always feel hot or cold more | N/A | ||
| PX992009_Long_COVID_Symptoms_Cardiovascular_Temperature_Dysregulation_Clear | ||||
| PX992009050300 | When did the always feeling hot or cold more | N/A | ||
| PX992009_Long_COVID_Symptoms_Cardiovascular_Temperature_Dysregulation_Normal_Activities | ||||
| PX992009050200 | Does/did the always feeling hot or cold 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
coronavirus, COVID, COVID-related symptoms, COVID-19, Heart rate, temperature, Blood pressure, John Hopkins