Protocol - Long COVID - Symptoms Due to COVID-19 - Genitourinary
Description
This protocol helps 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 genitourinary symptoms.
Specific Instructions
None
Availability
Protocol
Reproductive and Urinary Symptoms
1. Did you experience these symptoms, and when did you experience them?
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. If you experienced none of the symptoms in a set, select the checkbox (None of the below issues apply to me) above the grouped set.
[ ] None of the below reproductive and urinary symptoms apply to me
Reproductive and Urinary Symptoms
N/A | Week 1 | Week 2 | Week 3 | Week 4 | Month 2 | Month 3 | Month 4 | Month 5 | Month 6 | Month 7 | |
All menstrual/period issues | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] |
Bladder control issues | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] |
All Other Symptoms - Checkbox
2. Have you experienced any of these symptoms since the start of your COVID-19 illness?
(Please choose all options that apply)
[ ] Early Menopause
[ ] Post-Menopausal bleeding/spotting
[ ] Abnormally heavy periods/clotting
[ ] Abnormally irregular periods
[ ] Other menstrual issues ________
[ ] Decrease in size of testicles/penis
[ ] Pain in testicles
[ ] Other semen/penis/testicles issues ________
[ ] Sexual dysfunction (difficulty maintaining erection, vaginal dryness, difficulty orgasming)
[ ] Urinary issues, other ________
[ ] None of the above
Symptom Course
3. How severe were/are your symptoms over the course of the weeks/months?
If you experienced multiple severities for symptoms within the time period, select the most severe within that time period.
No symptom | Very Mild | Mild | Moderate | Severe | Very Severe | |
Week 1 | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] |
Week 2 | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] |
Week 3 | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] |
Week 4 | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] |
Month 2 | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] |
Month 3 | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] |
Month 4 | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] |
Month 5 | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] |
Month 6 | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] |
Month 7+ | [ ] | [ ] | [ ] | [ ] | [ ] | [ ] |
4. Which of these descriptions appropriately describes your experience with relapses, and your symptom course overall? Please select all that apply:
[ ] My relapses happen in a regular pattern (monthly, daily, or weekly).
[ ] My relapses happen in an irregular pattern (randomly).
[ ] My relapses happen in response to a trigger (stress, alcohol, exercise/exertion, etc).
[ ] My relapses are getting shorter/easier over time.
[ ] My relapses are getting longer/harder over time.
[ ] My relapse severity has stayed about the same over time.
[ ] Overall, my symptoms have slowly gotten better over time.
[ ] Overall, my symptoms have stayed about the same over time.
[ ] Overall, my symptoms have slowly worsened over time.
[ ] I got worse rapidly.
[ ] I got better rapidly.
[ ] Other ___________
7. Which of these trigger a relapse or worsening of symptoms? Please select all that apply:
[ ] Stress
[ ] Alcohol
[ ] Caffeine
[ ] Heat
[ ] Period/menstruation
[ ] Week before period/menstruation
[ ] Exercise
[ ] Physical activity
[ ] Mental activity
[ ] Other ___________
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
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, 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
University College London. (2022). Online Survey on Recovery from COVID-19, Section “Reproductive and Urinary Sections”.
General References
NoneProtocol ID
992017
Variables
Export VariablesVariable Name | Variable ID | Variable Description | dbGaP Mapping | |
---|---|---|---|---|
PX992017_Long_COVID_Symptoms_Genitourinary_Other_Covid_Symptoms | ||||
PX992017020100 | Have you experienced any of these symptoms more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Other_Covid_Symptoms_Other_Menstrual_Issues | ||||
PX992017020200 | Have you experienced any of these symptoms more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Other_Covid_Symptoms_Other_Semen_Penis_Testicle_Issues | ||||
PX992017020300 | Have you experienced any of these symptoms more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Other_Covid_Symptoms_Other_Urinary_Issues | ||||
PX992017020400 | Have you experienced any of these symptoms more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Reproductive_Urinary_Symptoms_Bladder_Control_Issues | ||||
PX992017010300 | Did you experience these symptoms, and when more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Reproductive_Urinary_Symptoms_Menstrual_Issues | ||||
PX992017010200 | Did you experience these symptoms, and when more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Reproductive_Urinary_Symptoms_None | ||||
PX992017010100 | Did you experience these symptoms, and when more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Reproductive_Urinary_Symptoms_Other | ||||
PX992017010400 | Did you experience these symptoms, and when more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Courses_Replase | ||||
PX992017040100 | Which of these descriptions appropriately more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Courses_Replase_Other | ||||
PX992017040200 | Which of these descriptions appropriately more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Relapse_Trigger | ||||
PX992017050100 | Which of these trigger a relapse or more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Relapse_Trigger_Other | ||||
PX992017050200 | Which of these trigger a relapse or more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Month_2 | ||||
PX992017030500 | How severe were/are your symptoms over the more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Month_3 | ||||
PX992017030600 | How severe were/are your symptoms over the more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Month_4 | ||||
PX992017030700 | How severe were/are your symptoms over the more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Month_5 | ||||
PX992017030800 | How severe were/are your symptoms over the more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Month_6 | ||||
PX992017030900 | How severe were/are your symptoms over the more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Month_7 | ||||
PX992017031000 | How severe were/are your symptoms over the more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Week_1 | ||||
PX992017030100 | How severe were/are your symptoms over the more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Week_2 | ||||
PX992017030200 | How severe were/are your symptoms over the more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Week_3 | ||||
PX992017030300 | How severe were/are your symptoms over the more | N/A | ||
PX992017_Long_COVID_Symptoms_Genitourinary_Symptom_Severity_Week_4 | ||||
PX992017030400 | How severe were/are your symptoms over the 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
Johns Hopkins, COVID, long COVID, symptoms, menstrual, bladder, menopause
Measure Protocols
Publications
There are no publications listed for this protocol.