Protocol - Long COVID - Symptoms Due to COVID-19 - Psychiatric (Long Form)
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 sleep and hallucinations.
Specific Instructions
None
Availability
Protocol
1a. Do you still have the hallucinations, altered consciousness?
[ ] 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 hallucinations, altered consciousness 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 hallucinations, altered consciousness 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 difficulty sleeping?
[ ] 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 difficulty sleeping 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 difficulty sleeping 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 insomnia (difficulty falling and staying asleep)?
[ ] 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 insomnia (difficulty falling and staying asleep) 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 insomnia (difficulty falling and staying asleep) 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 the hypersomnia (excessive sleepiness or drowsiness)?
[ ] 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 hypersomnia (excessive sleepiness or drowsiness) 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 hypersomnia (excessive sleepiness or drowsiness) 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 have disturbed sleep (nightmares, night sweats, etc.)?
[ ] 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 disturbed sleep (nightmares, night sweats, etc.) 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 disturbed sleep (nightmares, night sweats, etc.) 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 down or depressed?
[ ] 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 down or depressed 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 down or depressed 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
7a. Do you still feel anxious?
[ ] 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
7b. Does/did the feeling anxious 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
7c. When did the feeling anxious 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
Not Applicable
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 hallucinations, altered consciousness; difficulty sleeping; insomnia; hypersomnia; disturbed sleep; feeling down or depressed; and feeling anxious.
General References
NoneProtocol ID
992007
Variables
Export Variables| Variable Name | Variable ID | Variable Description | dbGaP Mapping | |
|---|---|---|---|---|
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Anxious | ||||
| PX992007070100 | Do you still feel anxious? | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Anxious_Clear | ||||
| PX992007070300 | When did the feeling anxious clear? | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Anxious_Normal_Activites | ||||
| PX992007070200 | Does/did the feeling anxious affect your more | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Difficulty_Sleeping | ||||
| PX992007020100 | Do you still have difficulty sleeping? | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Difficulty_Sleeping_Clear | ||||
| PX992007020300 | When did the difficulty sleeping clear? | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Difficulty_Sleeping_Normal_Activities | ||||
| PX992007020200 | Does/did the difficulty sleeping affect your more | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Distrubed_Sleep_Clear | ||||
| PX992007050300 | When did the disturbed sleep (nightmares, more | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Disturbed_Sleep | ||||
| PX992007050100 | Do you still have disturbed sleep more | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Disturbed_Sleep_Normal_Activities | ||||
| PX992007050200 | Does/did the disturbed sleep (nightmares, more | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Down_Depressed | ||||
| PX992007060100 | Do you still feel down or depressed? | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Down_Depressed_Clear | ||||
| PX992007060300 | When did the feeling down or depressed clear? | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Down_Depressed_Normal_Activities | ||||
| PX992007060200 | Does/did the feeling down or depressed more | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Hallucinations_Altered_Consciousness | ||||
| PX992007010100 | Do you still have the hallucinations, more | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Hallucinations_Clear | ||||
| PX992007010300 | When did the hallucinations, altered more | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Hallucinations_Normal_Activities | ||||
| PX992007010200 | Does/did the hallucinations, altered more | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Hypersomnia | ||||
| PX992007040100 | Do you still have the hypersomnia (excessive more | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Hypersomnia_Clear | ||||
| PX992007040300 | When did the hypersomnia (excessive more | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Hypersomnia_Normal_Activities | ||||
| PX992007040200 | Does/did the hypersomnia (excessive more | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Insomnia | ||||
| PX992007030100 | Do you still have the insomnia (difficulty more | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Insomnia_Clear | ||||
| PX992007030300 | When did the insomnia (difficulty falling more | N/A | ||
| PX992007_Long_Covid_Symptoms_Psychiatric_Long_Insomnia_Normal_Activities | ||||
| PX992007030200 | Does/did the insomnia (difficulty falling 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, hallucinations, sleep problems, insomnia, depression, anxiety, Johns Hopkins
Measure Protocols
Publications
There are no publications listed for this protocol.