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Recommendations for Common Data Elements for COVID-19 Studies Including Pregnant Participants
Source: National Institute of Child Health and Human Development [National Institutes of Health] (NICHD)Date Published: 12/15/2020Format: TextAnnotation: We present a battery of recommended biomedical and psychosocial common data elements (CDEs) and measures that, when combined across datasets, can improve our collective understanding of COVID-19 in pregnant and lactating women and their neonates. Experts across eight large pregnancy cohort studies developed these recommendations for use by any planned or upcoming COVID-19 study that includes women of reproductive age or pregnant women. We encourage researchers to include some or all of these measures, which cover key medical and psychosocial domains relevant to pregnancy and childbirth, into their studies to maximize the potential for data harmonization while continuing to advance their own study goals.
Common biomedical data elements and measures aim to accelerate our understanding of the clinical course of the disease and its effects on pregnant women and their neonates, which will continue to evolve as treatments and vaccines become available. Here we highlight CDEs and measures across seven domains, which include: Baseline Maternal / Pregnancy Characteristics; Maternal COVID-19 Treatment; Maternal Outcomes; Obstetric / Pregnancy Outcomes; Neonatal Characteristics; Neonatal COVID-19 Testing; and Early Neonatal Outcomes. Recommendations assume that information from all patient visits (e.g., prenatal visits, COVID-19 testing, and delivery) can be collected via medical chart or downloaded data from electronic health records.
Common psychosocial data elements and measures aim to advance our understanding of the psychological, behavioral, and social effects of the virus and the pandemic on pregnant women and their neonates. Here we highlight CDEs and measures across six domains, including: Socioeconomic Status, Housing, and Emergent Financial Strain; Medical Care; Impact on Parenting; Stressful Life Events; Maternal Mental Health; and Health Related Behaviors.
Questions Adapted From: The majority of the recommended CDEs are already in use in ongoing COVID-19 studies, as indicated below and in footnotes throughout.
Biomedical: Adapted from Maternal Fetal Medicine Unit (GRAVID) COVID-19 and Delivery Case Report Forms with additional input from the Study of Pregnancy and Neonatal Health (SPAN) and other ongoing or planned studies.
Psychosocial: The source for each question is provided in the footnotes.
A full list of sources used is as follows:
2020 COVID-19 Household Pulse Survey https://www.census.gov/data/experimental-data-products/household-pulse-survey.html;
All of Us Research Program: COVID-19 Participant Experience Survey (COPE) https://www.nlm.nih.gov/dr2/COPE_Survey_NIH_All_of_Us_Clean_4.27.20.pdf;
Brief Resilient Coping Scale (from MACS-WIHS Baseline COVID-19 Abbreviated Questionnaire) https://www.nlm.nih.gov/dr2/MACS-WIHS_questionnaire_BLCOVID-040620.pdf;
Columbia COVID-19 Questionnaire http://www.columbiamedicine.org/divisions/kiryluk/study_covid19.php;
Coronavirus Health Impact Survey (CRISIS) https://www.nlm.nih.gov/dr2/CRISIS_Parent_Caregiver_Follow_Up_Current_Form_V0.3.pdf;
Coronavirus Perinatal Experiences-Impact Survey (COPE-IS) https://www.nlm.nih.gov/dr2/COPE-Impact_Survey_Perinatal_Pandemic_Survey.pdf;
Environmental Influences on Child Health Outcomes (ECHO) COVID-19 Questionnaire https://www.nlm.nih.gov/dr2/C19-aPV_COVID-19_Questionnaire-Adult_Primary_Version_20200409_v01.30.pdf;
Everyday Discrimination Scale (Short version) https://scholar.harvard.edu/files/davidrwilliams/files/measuring_discrimination_resource_june_2016.pdf;
GAD 7 https://med.dartmouth-hitchcock.org/documents/GAD-7-anxiety-screen.pdf;
Impact of Event Scale-6 https://www.researchgate.net/publication/26250275_Brief_measure_of_posttraumatic_stress_reactions_Impact_of_Event_Scale-6;
Infant Feeding Practices Study II https://www.cdc.gov/breastfeeding/data/ifps/questionnaires.htm;
Intimate Partner Violence ACOG Practice Bulletin https://www.acog.org/clinical/clinical-guidance/committee-opinion/articles/2012/02/intimate-partner-violence ;
JHU Community Response https://www.nlm.nih.gov/dr2/JHU_COVID-19_Community_Response_Survey_v1.3.pdf ;
MACS-WIHS Baseline COVID-19 Abbreviated Questionnaire https://www.nlm.nih.gov/dr2/MACS-WIHS_questionnaire_BLCOVID-040620.pdf;
National Health and Nutrition Examination Survey (NHANES), Demographics Module, 2019-2020 https://wwwn.cdc.gov/nchs/nhanes/continuousnhanes/questionnaires.aspx?BeginYear=2019;
PhenX: Health Reform Monitoring Survey 2015 https://www.phenxtoolkit.org/protocols/view/11502;
PhenX: 6 item standard measure from USDA Economic Research Service https://www.phenxtoolkit.org/protocols/view/270301#tabsource;
PhenX: Edinburgh Postnatal Depression Scale (EPDS) https://www.phenxtoolkit.org/protocols/view/241401;
PhenX: Panel Study of Income Dynamics (PSID), 2007 https://www.phenxtoolkit.org/protocols/view/11301;
PhenX: Pregnancy Risk Assessment Monitoring System (PRAMS) https://www.phenxtoolkit.org/protocols/view/720901;
Pittsburgh Hill / Homewood Research on Neighborhood Change and Health (PHRESH) https://drive.google.com/file/d/1q9DOJGNT7oe_KGMUXFCi73vIu57W3D3O/view;
Postpartum Bonding Questionnaire https://sundspsykologerna.se/files/Brockington-et-al-2006-PBQ-validation-pdf.pdf;
RAND American Life Panel Impact of COVID-19 Survey https://www.phenxtoolkit.org/toolkit_content/PDF/RAND_ALP_COVID19.pdf;
Stanford COVID-19 Community Outcomes (COCO) Survey https://drive.google.com/file/d/1zHnqLG-I8Htl6SdhyFxuJzP_qYRFPgKi/view;
Study of Pregnancy and Neonatal Health (SPAN) https://www.nichd.nih.gov/about/org/diphr/officebranch/eb/SPAN: Attained measures via personal communication
Population: Adult Workers
Adults and Teens
First Responders, Emergency Medical Services (EMS) Personnel, Police/Fire Departments
Military
Pregnant or Lactating Women
Length: There are a total of 121 questions within the tool, 49 of which fall under Biomedical data elements, and 72 of which fall under Psychosocial data elements
Time to Complete: Approximately 20 minutes to complete all questions included in the Psychosocial measure.
Mode of Administration: Face-to-face
Online (e.g., computer-assisted interview)
Pen and Paper
Telephone
Administered by: Lay Interviewer
Professional Interviewer
Self Administered
Specialist/Doctor/Expert
Trained Lay Examiner/Interviewer
Special Considerations: The recommendations herein are not meant to be distributed as one comprehensive questionnaire, but rather represent the recommended measures for collecting information regarding the most important data elements to assess in relation the effects of COVID-19 on pregnant women and their neonates. We encourage researchers to include some or all of these measures into their studies to maximize the potential for data harmonization while continuing to advance their own study goals.
Language(s): English...[See more] [See less]Type: Guideline/Assessment ToolAccess Notes: Free/Publicly Available
"Promoting Data Harmonization to Accelerate COVID-19 Pregnancy Research", February 2021. https://disasterinfo.nlm.nih.gov/content/files/NIHPromotin%20DataHarmonizationAccelerateCOVID19PregnancyResearchBiomedicalPsychosocialBiospecimens_vF.pdf
Available Formats: TEXT
Contact Information: Caroline Signore, NICHD, signorec@mail.nih.gov; Nahida Chakhtoura, NICHD, Nahida.chakhtoura@nih.gov; Jessica Gleason, NICHD, Jessica.gleason@nih.gov; Stephen Gilman, NICHD, Stephen.gilman@nih.govIncludes Research Tools: Yes.ID: 24206. From: Disaster Lit®a database of the U.S. National Library of Medicine. -
COVID-19: Documenting Challenges Faced by California Families with Children 0-5 Years Old on WIC
Source: University of California, DavisDate Published: 8/2020Format: PDFAnnotation: This is a mixed-method, interviewer-administered tool to (1) identify barriers that WIC (Special Supplemental Nutrition Program for Women, Infants, and Children) participants in California are experiencing in using WIC food benefits (e.g., access to WIC-eligible foods); and (2) identify additional short-term unmet basic needs (e.g., food and housing insecurity, as well as access to unemployment benefits, healthcare, childcare, and social support while required to remain at home) of low-income families during the COVID-19 pandemic.
Questions Adapted From: U.S. Household Food Security Survey Module, USDA ERS: Q43
COVID-19 Community Outcomes (COCO) Needs Assessment, Stanford University: Q1, Q4
The Epidemic Pandemic Impacts Inventory (EPII): Q10a
Patient Health Questionnaire-2 (PHQ-2): Q48
Population: Adults Only
Length: 55 questions
Time to Complete: 30-35 minutes
Mode of Administration: Telephone
Administered by: Professional Interviewer
Language(s): English; Spanish
IRB Application https://disasterinfo.nlm.nih.gov/content/files/WIC_COVID_IRB.pdf
COVID-19 Documenting Challenges Faced by California Families with Children 0-5 Years Old on WIC: Full Questionnaire https://www.phenxtoolkit.org/toolkit_content/PDF/UCANR_WIC.pdf
COVID Impacts: Diagnosis; Overall Impact https://www.phenxtoolkit.org/toolkit_content/PDF/UCANR_WIC_Impacts.pdf
WIC participation and enrollment: Federal Assistance https://www.phenxtoolkit.org/toolkit_content/PDF/UCANR_WIC_Participation.pdf
WIC services: Sources of information about COVID-19 https://www.phenxtoolkit.org/toolkit_content/PDF/UCANR_WIC_Services.pdf
Shopping for WIC foods: Food Security https://www.phenxtoolkit.org/toolkit_content/PDF/UCANR_WIC_Foods.pdf
General food shopping: Food Security; Dietary Intake https://www.phenxtoolkit.org/toolkit_content/PDF/UCANR_WIC_General_Food.pdf
Immigration status: Personal Demographics https://www.phenxtoolkit.org/toolkit_content/PDF/UCANR_WIC_Immigration.pdf
Mental health: General Mental Health https://www.phenxtoolkit.org/toolkit_content/PDF/UCANR_WIC_Mental_Health.pdf
COVID-19 Documenting Challenges Faced by California Families with Children 0-5 Years Old on WIC (Spanish): Full Questionniare https://www.phenxtoolkit.org/toolkit_content/PDF/UCANR_WIC_Spanish.pdf
COVID Impacts (Spanish): Diagnosis; Overall Impact https://www.phenxtoolkit.org/toolkit_content/PDF/UCANR_WIC_Impacts_Spanish.pdf
WIC participation and enrollment (Spanish): Federal Assistance https://www.phenxtoolkit.org/toolkit_content/PDF/UCANR_WIC_Participation_Spanish.pdf
WIC services (Spanish): Sources of information about COVID-19 https://www.phenxtoolkit.org/toolkit_content/PDF/UCANR_WIC_Services_Spanish.pdf
Shopping for WIC foods (Spanish): Food Security https://www.phenxtoolkit.org/toolkit_content/PDF/UCANR_WIC_Foods_Spanish.pdf
General food shopping (Spanish): Food Security; Dietary Intake https://www.phenxtoolkit.org/toolkit_content/PDF/UCANR_WIC_General_Food_Spanish.pdf
Immigration status (Spanish): Personal Demographics https://www.phenxtoolkit.org/toolkit_content/PDF/UCANR_WIC_Immigration_Spanish.pdf
Mental health (Spanish): General Mental Health https://www.phenxtoolkit.org/toolkit_content/PDF/UCANR_WIC_Mental_Health_Spanish.pdf...[See more] [See less]Type: Guideline/Assessment ToolAccess Notes: Free/Publicly Available
Link to Spanish survey: https://www.nlm.nih.gov/dr2/WIC_COVID_Interview_Guide_SPANISH.pdf
Citation(s):
Ritchie, LD & Whaley, SE (2020). COVID-19: Documenting Challenges Faced by California Families with Children 0-5 Years Old on WIC.
Research Brief: Ritchie L, Vital N, Au LE, Gosliner WA, Meza M, Anderson CE, Strochlic R, Plank K, Tsai M, Martinez CE, Olague C, Rios A, Lee DL, Hecht CE, Whaley SE. WIC Especially Critical during the COVID-19 Pandemic: Voices of Participants in Los Angeles County. UC ANR Nutrition Policy Institute. Public Health Foundation Enterprise, Women Infants and Children (WIC). The David and Lucille Packard Foundation. January 2021.
https://ucanr.edu/sites/NewNutritionPolicyInstitute/files/342602.pdf
Available Formats: PDF
Contact Information:
Lorrene Ritchie, PhD, RD
Director and Cooperative Extension Specialist, Nutrition Policy Institute
University of California Division of Agriculture and Natural Resources
Email: lritchie@ucanr.eduIncludes Research Tools: Yes.ID: 23584. From: Disaster Lit®a database of the U.S. National Library of Medicine. -
COVID-19 Impact Survey
Source: National Alzheimer’s Coordinating Center (NACC)Date Published: 7/2/2020Format: PDFAnnotation: The COVID-19 Impact Survey was used to gather data on the effect of the pandemic on participants enrolled in the clinical cores of the National Institute on Aging (NIA) Alzheimer's Disease Research Centers, a population of mostly older Americans with cognitive status ranging from normal to mild cognitive impairment to dementia (resulting from Alzheimer's disease and a range of other etiologies). An additional survey was created for the co-participants.
Questions Adapted From: N/A
Population: Adults Only
Length: 21 questions for the participant, 10 for the co-participant
Time to Complete: 15 minutes for participant, 10 minutes for co-participant
Mode of Administration: Face-to-face
Online (e.g., computer-assisted interview)
Pen and Paper
Telephone
Administered by: Self Administered
Specialist/Doctor/Expert
Trained Lay Examiner/Interviewer
Language(s): English
COVID-19 Impact Survey: Full Questionnaire https://www.phenxtoolkit.org/toolkit_content/PDF/NACC_COVID.pdf
COVID-19 Impact Survey - Participant: Diagnosis; General Mental Health; Overall Impact https://www.phenxtoolkit.org/toolkit_content/PDF/NACC_COVID_Participant.pdf
COVID-19 Impact Survey - Co-participant: General Mental Health; Overall Impact; Health Care https://www.phenxtoolkit.org/toolkit_content/PDF/NACC_COVID_Coparticipant.pdf
COVID-19 Technology Accessibility Survey: Technology Use https://www.phenxtoolkit.org/toolkit_content/PDF/NACC_Covid_Tech_Survey.pdf...[See more] [See less]Type: Guideline/Assessment ToolAccess Notes: Free/Publicly Available; Direct link to document: https://www.alz.washington.edu/NONMEMBER/Covid-impact-surveys.pdf
Available Formats: PDF
Contact Information: National Alzheimer's Coordinating Center, Elizabeth Robichaud, naccmail@uw.edu
Survey originally developed by the ADRC Clinical Task Force, Allan Levey, MD, PhD, ChairIncludes Research Tools: Yes.ID: 23179. From: Disaster Lit®a database of the U.S. National Library of Medicine. -
Multidimensional Face Mask Perceptions Scale: Eight Dimensional Measure to Gauge Negative Perceptions of Face Mask Wearing
Source: University of South AlabamaDate Published: 7/2020Format: TextAnnotation: This is a 32-item, eight-dimension, self-report scale that can be administered online or via pencil and paper. The purpose of this scale is to assess perceptions regarding face mask wearing, and it is composed of eight dimensions with four items representing each dimension. The eight dimensions (with example items) are: comfort ("Face masks disrupt my breathing"), efficacy doubts ("Face masks provide few health benefits"), access ("I do not know where to buy a face mask"), compensation ("I stay away from people when I go out"), inconvenience ("I forget to wear a face mask when going out"), appearance ("Face masks look silly"), attention ("Face masks make people seem untrustworthy"), and independence ("I do not like blindly following suggestions"). The scale is administered with the following instructions: "Please indicate the extent to which you disagree to agree with the following statements regarding face masks, which refers to cloth coverings worn on the face typically intended to prevent the spread of disease and illness. Answer each of the following items as if they began with: When I do not wear a face mask in public it is because. . ." The psychometric properties and validity of the scale were strongly supported in a prior study (Howard, 2020). In Study 1, Howard (2020) utilized a qualitative coding approach to create the items based on participants' stated reasons for not wearing face masks. In Study 2, Howard (2020) supported the factor structure of the scale via exploratory factor analysis (EFA), provided evidence of the scale's concurrent validity, and demonstrated that certain dimensions significantly correlated to face mask wearing. In Study 3, Howard (2020) further supported the factor structure of the scale via confirmatory factor analysis (CFA). Together, these cumulative results provide assurance that this scale adequately gauges face mask perceptions in a multidimensional manner.
Population: Adult Workers
Adults and Teens
All/Anyone
Cleanup/Disaster Worker
Length: 32 Items
Time to Complete: 3 Minutes
Mode of Administration: Face-to-face
Online (e.g., computer-assisted interview)
Pen and Paper
Telephone
Administered by: Lay Interviewer
Parent/Teacher
Professional Interviewer
Self Administered
Specialist/Doctor/Expert
Trained Lay Examiner/Interviewer
Language(s): English
Multidimensional Face Mask Perceptions Scale: Attitudes; Personal Protective Equipment https://www.phenxtoolkit.org/toolkit_content/PDF/SA_MD_Face_Mask_Perceptions_Scale.pdfType: Guideline/Assessment ToolAccess Notes: Free/Publicly Available
Citation(s):
Howard, M. C. (2020). Understanding face mask use to prevent coronavirus and other illnesses: Development of a multidimensional face mask perceptions scale. British Journal of Health Psychology.
Available Formats: TEXT
Contact Information: Dr. Matt C. Howard
University of South Alabama
337 Mitchell College of Business
Mobile, AL 36695
MHoward@SouthAlabama.edu
MattCHoward.comIncludes Research Tools: Yes.ID: 23058. From: Disaster Lit®a database of the U.S. National Library of Medicine. -
National Health and Aging Trends Study (NHATS) COVID-19 Questionnaires
Source: Johns Hopkins University, Bloomberg School of Public HealthDate Published: 6/20/2020Format: PDFAnnotation: This set of questionnaires was used in a supplemental mail study of the National Health and Aging Trends Study (NHATS) conducted in 2020. The questionnaires aim to assess experiences during the COVID-19 outbreak of: 1) NHATS participants (ages 70 and older) and 2) the up to two adult family members and friends who helped NHATS participants the most during the outbreak. Two types of mail questionnaires were administered: 1) questionnaires designed for NHATS participants or their proxy respondents (SP / proxy) and 2) questionnaires designed for adult family members and friends (FF) who helped NHATS participants. The SP questionnaires includes 13 sections. Topics cover symptoms of COVID-19, measures taken to limit spread of the virus, and changes during the pandemic in the NHATS participants' living situation, contact with family and friends, productive activities (e.g., work, volunteering, caregiving), grocery shopping, health care, finances, wellbeing and daily activities. Participants were also asked to provide contact information for the two adult family members or friends who helped most during the outbreak. The FF questionnaire includes 17 sections, many of which align with the sections in the SP/Proxy questionnaires. In addition, the FF questionnaire asks about the FF's relationship with the NHATS participant, help given to the NHATS participant before and during the outbreak and reasons for helping. For those who helped for health or functioning reasons, three additional sections about caregiving are included: time spent helping the NHATS participant, dementia caregiving (if help is memory related) and helping challenges and supports.
Questions Adapted From: Symptoms of COVID-19 module (questions 5-9 in SP/proxy questionnaire and 15-19 in FF questionnaire) is adapted from MESA, common symptom questions are adapted from CDC definitions; Measures to Limit Spread of COVID-19 questions (question 12 in SP/proxy questionnaire and 22 in FF questionnaire) are adapted from MESA; Questions 13-16 on assisted Living in SP questionnaire is adapted based on AHCA guidance; Questions 17, 18, 21, and 22 in SP/Proxy questionnaire aligned with items in the HRS COVID telephone module; Questions 27-28 in SP/Proxy questionnaire and 50-51 in FF questionnaire aligned with HRS COVID SAQ; Questions 29-30 in SP/Proxy questionnaire aligned with HRS COVID SAQ and life space constriction items in the simplified version of Stalvey et al. (1999); Questions 33-34 in the SP/Proxy questionnaire aligned with content in NHATS. Questions 35-36 in the SP/Proxy questionnaire and 48 in the FF questionnaire aligned with HRS COVID SAQ; Questions 37-40 on changes in grocery shopping in the SP/Proxy questionnaire aligned with content in NHATS; Questions 41-45 on changes in health care in the SP/Proxy questionnaire are adapted from NSOC III (HC module) and HRS COVID telephone module; Question 46 in the SP/Proxy questionnaire and 29 in the FF questionnaire are adapted from HRS COVID telephone module; Questions 47-48 in the SP/Proxy questionnaire 30-31 in the FF questionnaire are adapted from PSID shutdown / COVID19 module; Questions 49-52 in the SP/Proxy questionnaire aligned with HRS COVID SAQ; Question 57 in the SP/Proxy questionnaire and 38 in the FF questionnaire are adapted from PTSD-8 (Hansen et al. 2010); Question 33 in the FF questionnaire aligned with PHQ2 and GAD in NHATS (HC); Question 53 in the SP/Proxy questionnaire and question 34 in the FF questionnaire aligned with NHATS (HC); Questions 60-69 on changes in daily activities in the SP/Proxy questionnaire aligned with NHATS (SC, MO, HA, DT, MC modules); Questions 32, 44, 49, 59-66, 71-76, and 78-79 in the FF questionnaire aligned with NSOC (HC, DI, AC, and CA module); Questions 53-58, and 67-70 in the FF questionnaire aligned with NHATS (SC, MO, HA, DT, MC, HA, and CP modules). References: Stalvey, B., Owsley, C., Sloane, M.E., Ball, K. (1999) The Life Space Questionnaire: A measure of the extent of mobility of older adults. Journal of Applied Gerontology 18: 479-498. Hansen, M., Andersen, T. E., Armour, C., Elklit, A., Palic, S., & Mackrill, T. (2010). PTSD-8: a short PTSD inventory. Clinical practice and epidemiology in mental health: CP & EMH, 6, 101.
Population: Adults Only
Length: 69 questions for the Sample Person (SP) Questionnaire, 63 questions for the Proxy Questionnaire, and 79 questions for the Family Members and Friends (FF) Questionnaire.
Time to Complete: Approximately 20 minutes
Mode of Administration: Pen and Paper
Administered by: Self Administered
Language(s): English (SP/proxy and FF questionnaires), Spanish (SP questionnaire)...[See more] [See less]Type: Guideline/Assessment ToolAccess Notes: Free/Publicly Available
Available Formats: PDF
Contact Information: Vicki A. Freedman, Institute for Social Research, University of Michigan, vfreedma@umich.edu; Judith Kasper, Johns Hopkins Bloomberg School of Public Health, jkasper1@jhu.edu.Includes Research Tools: Yes.ID: 24245. From: Disaster Lit®a database of the U.S. National Library of Medicine. -
COVID-19 Experiences Among South African Adolescent Girls and Their Mothers
Source: University of Illinois at Chicago, School of Public HealthDate Published: 6/18/2020Format: PDFAnnotation: This tool was developed to measure experiences during the COVID-19 pandemic among South African adolescent girls (ages 15-19 years) and their mothers/caregivers within the IMARA (Informed, Motivated, Aware and Responsible Adolescents and Adults) study. It addresses psychological experiences (e.g., stress) and coping strategies, as well as effects of COVID-19 on mother-daughter relationships, living situations, sexual risk behaviors (e.g., frequency of sexual intercourse, drug/alcohol use), and health practices (e.g., adherence to medication). It is designed to be completed via self-report, either in person or over the telephone.
Questions Adapted From: -Q1 is from the COVID-19 Exposure and Family Impact Survey (CEFIS), developed by The Center for Pediatric Traumatic Stress
-Qs 2-12 are adapted from the COVID-19 Questionnaire Child Self-Report Primary Version, Environmental Influences on Child Health
Population: Adults and Teens
Length: 23 questions
Time to Complete: 7-8 minutes
Mode of Administration: Online (e.g., computer-assisted interview)
Telephone
Administered by: Trained Lay Examiner/Interviewer
Language(s): English; Xhosa
COVID-19 Experiences among South African Adolescent Girls and their Mothers: Full Questionnaire https://www.phenxtoolkit.org/toolkit_content/PDF/UIC_COVID19Experiences_SouthAfricanAdolescentGirlsAndMothers.pdf
Mental Health: General Mental Health https://www.phenxtoolkit.org/toolkit_content/PDF/UIC_COVID19_Experiences_Mental.pdf
Personal and Family Impacts: Family Impact https://www.phenxtoolkit.org/toolkit_content/PDF/UIC_COVID19_Experiences_Impact.pdf
Risk-Reduction Behaviors: Substance Use; Sexual Behavior; Housing Security https://www.phenxtoolkit.org/toolkit_content/PDF/UIC_COVID19_Experiences_Risks.pdf...[See more] [See less]URL: https://www.nlm.nih.gov/dr2/COVID19Experiences_SouthAfricanAdolescentGirlsAndMothers_18June2020.pdfType: Guideline/Assessment ToolAccess Notes: Free/Publicly Available
Word version: https://www.nlm.nih.gov/dr2/COVID19Experiences_SouthAfricanAdolescentGirlsAndMothers_15June2020.docx
Link to Appendix A: https://disasterinfo.nlm.nih.gov/content/files/AppendixB4A14May2020_updated.docx
Available Formats: PDF
Contact Information: Dr. Geri Donenberg
Center for Dissemination and Implementation Science
University of Illinois at Chicago
Email: gerid@uic.eduIncludes Research Tools: Yes.ID: 22689. From: Disaster Lit®a database of the U.S. National Library of Medicine. -
Collaborating Consortium of Cohorts Producing NIDA Opportunities (C3PNO) COVID-19 Survey Protocol
Source: National Institute on Drug Abuse (NIDA)Date Published: 6/18/2020Format: PDFAnnotation: This document is the protocol for the "Collaborating Consortium of Cohorts Producing NIDA Opportunities (C3PNO) Survey of COVID-19 Risks/Effects, Substance Use, and HIV/AIDS Survey" (https://dr2.nlm.nih.gov/search/?q=22690). The protocol provides the background, study design, preliminary studies, recruitment and participant sampling, study procedures, data collection and measurements, and analytic strategy....[See more] [See less]Type: Study Design/ProtocolIncludes Research Tools: Yes.ID: 24241. From: Disaster Lit®a database of the U.S. National Library of Medicine. -
Pain Management Collaboratory (PMC) Coronavirus Pandemic (COVID-19) Measures: Version 2.0
Source: Yale UniversityDate Published: 5/20/2020Format: PDFAnnotation: This 7-item self-report instrument is intended for individuals who are participating in ongoing clinical research during the coronavirus pandemic. It was developed to quantify changes in psychosocial, functional, and financial factors that may influence clinical research participation and clinical research study outcomes. The domains measured include: (1.) Access to Healthcare, (2.) Social Support, (3.) Finances, (4.) Ability to Meet Basic Needs, (5.) Mental and Emotional Health as well as a participant (subjective) experience of personal and family exposure to coronavirus. It was designed to quickly assess, in a minimally-burdensome manner, the positive and negative aspects of the pandemic on multiple mediating factors that may impact study outcomes.
This instrument has a 3-month look back which can be adjusted to fit the study design. The tool is intended to be delivered at multiple time points (baseline and follow-up) to measure changes over time.
This instrument was developed by researchers for the Pain Management Collaboratory (PMC) which involves 11 pragmatic trials studying non-pharmacological approaches to pain management (e.g. physical therapy, chiropractic care, meditation) in military personnel and veterans; however, this instrument was written broadly enough to be used with any adult population involved in clinical research.
Questions Adapted From: The Phenotype and Outcome Work Group, within the Pain Management Collaboratory Coordinating Center (PMC3), is comprised of representatives from 11 pragmatic pain trials. The PMC3 collected COVID-related questionnaires from public sources, published instruments, and investigators within the Collaboratory. The Work Group members then met to review the resources compiled by PMC3, identified the key domains of interest, selected a question/response structure proposed for use by three PMC trial groups, revised the language within each question item until a consensus was obtained, and drafted the final instrument. This instrument has been approved by the Steering Committee for harmonized use of across PMC trials.
Population: Adults Only
Length: 7 items
Time to Complete: <5 minutes
Mode of Administration: Online (e.g., computer-assisted interview); Pen and Paper; Telephone
Administered by: Self Administered
Language(s): English
Pain Management Collaboratory (PMV) Coronavirus Pandemic (COVID-19) Measures: Overall Impact https://www.phenxtoolkit.org/toolkit_content/PDF/Yale_PMV_Covid19.pdfType: Guideline/Assessment ToolAccess Notes: Free/Publicly Available
Contact Information:
Yale University
Pain Management Collaboratory Coordinating Center
Email: painmanagementcollaboratory@yale.eduID: 23059. From: Disaster Lit®a database of the U.S. National Library of Medicine. -
Coronavirus Disability Survey (COV-DIS)
Source: University of MichiganDate Published: 5/2020Format: PDFAnnotation: The Coronavirus Disability Survey (COV-DIS) was developed by the University of Michigan Center for Disability Health and Wellness in order to learn about the experiences of persons with disabilities (PWD) during the novel coronavirus (COVID-19) pandemic. The psychometric properties of the COV-DIS have not yet been established, but will be disseminated publicly in the future. The objective of the COV-DIS is to provide critical data on the experiences of PWDs during the COVID-19 pandemic. The risk of many adverse health and disability outcomes is elevated in PWDs. The COV-DIS specifically measures general and psychological well-being, difficulty performing activities and instrumental activities of daily living, employment and financial challenges, and difficulty accessing transportation and information. The COVID-19 pandemic and legally mandated social distancing measures have the potential to exacerbate challenges in each of these domains for the population at large, but particularly for PWDs. Data that are acquired using the COV-DIS may be helpful for attending to the needs and challenges faced by PWDs during the current pandemic, as well as for planning for responses to future waves of COVID-19 and other high-impact societal stressors.
Questions Adapted From: Several items on the COV-DIS were adapted from survey items from the Understanding America Study (UAS), the Osteoporotic Fractures in Men (MrOS) Study, and the Study of Muscle, Mobility, and Aging (SOMMA) with permission from study investigators, as well as from the RAND 36-item Short Form Survey, and the Patient Health Questionnaire-2.
Population: Adults only
Length: 32 questions
Mode of Administration: Telephone
Email
Administered by: Self Administered/Self Report
Lay Interviewer
Language(s): English
Coronavirus Disability Survey (COV-DIS): Full Questionnaire https://www.phenxtoolkit.org/toolkit_content/PDF/UMich_COV-DIS_v02.pdf
General health: Health Care https://www.phenxtoolkit.org/toolkit_content/PDF/UMich_COV-DIS_v02_Health.pdf
Depressive symptoms: Mental Health https://www.phenxtoolkit.org/toolkit_content/PDF/UMich_COV-DIS_v02_Depression.pdf
Social isolation: Social Impact; Daily Impact https://www.phenxtoolkit.org/toolkit_content/PDF/UMich_COV-DIS_v02_Social_Isolation.pdf
Coronavirus infection/exposure: Status; Perceived Threat https://www.phenxtoolkit.org/toolkit_content/PDF/UMich_COV-DIS_v02_Infection.pdf
Daily activities: Daily Impact; Daily Life https://www.phenxtoolkit.org/toolkit_content/PDF/UMich_COV-DIS_v02_Daily.pdf
Access to medical care: Health Care https://www.phenxtoolkit.org/toolkit_content/PDF/UMich_COV-DIS_v02_Medical_Care.pdf
Employment and financial impact: Employment; Economic Insecurity https://www.phenxtoolkit.org/toolkit_content/PDF/UMich_COV-DIS_v02_Employment.pdf
Transportation and information access: Daily Impact; Sources of information about COVID-19 https://www.phenxtoolkit.org/toolkit_content/PDF/UMich_COV-DIS_v02_Transportation.pdf...[See more] [See less]Type: Guideline/Assessment ToolAccess Notes: Available Formats: PDF
All materials associated with the COV-DIS are made freely and publicly available at no cost. While not required, we encourage COV-DIS users to register using the following web address:https://umich.qualtrics.com/jfe/form/SV_38Wbm81ILp4VzOB
Contact information: Sara Weiss, MPH, weisssar@med.umich.edu
Full citation: Ehrlich JR, Bernard A, Weiss S, Stein JD, Ulin S, D’Souza C, Riddering A, Edwards P, Meade M, McKee M. (2020). The COV-DIS: Coronavirus Disability SurveyIncludes Research Tools: Yes.ID: 22358. From: Disaster Lit®a database of the U.S. National Library of Medicine. -
AURORA-COVID Impact Survey (AURORA-CIS)
Source: University of North Carolina at Chapel Hill (UNC)Date Published: 5/2020Format: PDFAnnotation: The AURORA-CIS is a newly designed short survey to learn and understand the impact of the coronavirus (COVID-19/SARS-CoV-2) pandemic on the trauma survivors currently enrolled in the AURORA Study. This supplementary survey was created to assess the additional impact of the pandemic on the mental health outcomes of the study participants beyond that which could be associated with the traumatic event that led to their emergency room visit. There are four questions asked weekly and an additional fifth question included every month. All questions appear at the end of the participants' regularly deployed weekly smartphone-based flash survey.
The AURORA Study is a 12-month longitudinal study that represents a major national initiative to improve the understanding, prevention, and treatment of post-traumatic neuropsychiatric sequelae. Five thousand participants who present to the emergency department (28 sites) for evaluation after trauma exposure, meet screening and eligibility criteria, and consent to the study will undergo a brief emergency department assessment of trauma-related, psychosocial, neurocognitive, and biological factors. Participants will be discharged with ecological monitoring, and will complete physiologic, biologic, neurocognitive, symptom, and health outcome assessments during one-year follow-up. Subsamples of study participants will undergo in-person deep phenotyping at two weeks and six months, consisting of biologic collection, functional magnetic resonance imaging (fMRI), and psychophysical evaluation. The COVID survey items will be administered to both existing and newly enrolled participants. No pilot testing for the questions was done.
Population: Adults only
Length: 5 questions
Mode of Administration: Online (e.g., computer-assisted interview)
Administered by: Self Administered
Language(s): English
AURORA-COVID Impact Survey (AURORA-CIS): Full Questionnaire https://www.phenxtoolkit.org/toolkit_content/PDF/UNC_AURORA-CIS.pdf
Financial impact of COVID-19: Economic Insecurity https://www.phenxtoolkit.org/toolkit_content/PDF/UNC_AURORA-CIS_Financial.pdf
Health impact (self and loved ones) of COVID-19: Diagnosis https://www.phenxtoolkit.org/toolkit_content/PDF/UNC_AURORA-CIS_Health_v2.pdf
Worry about COVID-19: Mental Health https://www.phenxtoolkit.org/toolkit_content/PDF/UNC_AURORA-CIS_Worry.pdf
Employment status due to COVID-19: Employment https://www.phenxtoolkit.org/toolkit_content/PDF/UNC_AURORA-CIS_Employment.pdf...[See more] [See less]Type: Guideline/Assessment ToolAccess Notes: Free/Publicly Available
Available Formats: PDF
Contact Information:
Suraj Chandy Oomman: surajoomman@med.unc.edu or auroracoordinator@med.unc.edu;Includes Research Tools: Yes.ID: 22360. From: Disaster Lit®a database of the U.S. National Library of Medicine.
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