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
This protocol is freely available; permission not required for use.
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
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 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