Protocol - Long COVID - Symptoms Due to COVID-19 - Respiratory
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 cough, shortness of breath and tightness in chest.
Specific Instructions
None
Availability
This protocol is freely available; permission not required for use.
Protocol
1a. Do you still have the new or worsening cough?
[ ] 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 new or worsening cough 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 new or worsening cough 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 shortness of breath?
[ ] 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 shortness of breath 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 shortness of breath 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 discomfort, tightness, or pressure in chest?
[ ] 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 discomfort, tightness, or pressure in chest 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 discomfort, tightness, or pressure in chest 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
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 worsening cough; shortness of breath; discomfort, tightness, or pressure in chest.
General References
NoneProtocol ID
992010
Variables
Export Variables| Variable Name | Variable ID | Variable Description | dbGaP Mapping | |
|---|---|---|---|---|
| PX992010_Long_COVID_Symptoms_Respiratory_Discomfort_Chest | ||||
| PX992010030100 | Do you still have the discomfort, tightness, more | N/A | ||
| PX992010_Long_COVID_Symptoms_Respiratory_Discomfort_Chest_Clear | ||||
| PX992010030300 | When did the discomfort, tightness, or more | N/A | ||
| PX992010_Long_COVID_Symptoms_Respiratory_Discomfort_Chest_Normal_Activities | ||||
| PX992010030200 | Does/did the discomfort, tightness, or more | N/A | ||
| PX992010_Long_COVID_Symptoms_Respiratory_New_Worsening_Cough | ||||
| PX992010010100 | Do you still have the new or worsening cough? | N/A | ||
| PX992010_Long_COVID_Symptoms_Respiratory_New_Worsening_Cough_Clear | ||||
| PX992010010300 | When did the new or worsening cough clear? | N/A | ||
| PX992010_Long_COVID_Symptoms_Respiratory_New_Worsening_Cough_Normal_Activities | ||||
| PX992010010200 | Does/did the new or worsening cough affect more | N/A | ||
| PX992010_Long_COVID_Symptoms_Respiratory_Shortness_Breath | ||||
| PX992010020100 | Do you still have the shortness of breath? | N/A | ||
| PX992010_Long_COVID_Symptoms_Respiratory_Shortness_Breath_Clear | ||||
| PX992010020300 | When did the shortness of breath clear? | N/A | ||
| PX992010_Long_COVID_Symptoms_Respiratory_Shortness_Breath_Normal_Activities | ||||
| PX992010020200 | Does/did the shortness of breath affect your 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, cough, shortness of breath, tightening chest, John Hopkins