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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. -
ISARIC Global COVID-19 Follow Up Study Protocol
Source: International Severe Acute Respiratory and emerging Infection Consortium (ISARIC)Date Published: 11/17/2020Format: TextAnnotation: The ISARIC COVID-19 Long term protocol & Case Report Form (CRF) survey is designed to follow up adults and children with COVID-19 over time. It can be used for one off or serial follow up of patients post-hospital discharge and for people who were not hospitalized. It is designed to enable patient self-assessment or clinical led assessment, via post, telephone, online or in-clinic visit for wide dissemination and inclusion using limited resources. It can be combined with sampling and further diagnostics.
Includes Common Data Elements From: No
Population: Patients included in the ISARIC/WHO clinical characterisation study, with a confirmed COVID-19 diagnosis post-discharge at serial intervals
Language(s): English...[See more] [See less]URL: https://isaric.org/research/covid-19-clinical-research-resources/covid-19-long-term-follow-up-study/Type: Study Design/ProtocolAccess Notes: Free/Publicly Available
Available Formats: Text
Contact Information: ncov@isaric.orgIncludes Research Tools: Yes.ID: 24242. From: Disaster Lit®a database of the U.S. National Library of Medicine. -
Hidden Impact of COVID-19 on Children: A Global Research Series
Source: Save the Children InternationalDate Published: 9/10/2020Format: PDFAnnotation: This global study, with several documents, reveals the hidden impacts of COVID-19 pandemic response measures that are impacting children’s health, nutrition, education, learning, protection, well-being, family finances, and poverty.
Population: Adults and teens (NOTE: it’s ages 11 and up, actually)
Length: approximately 100 questions
Time to Complete: 25 minutes
Mode of Administration: Online (e.g., computer-assisted interview)
Administered by: Parent/Teacher; Self Administered
Language(s): English; Albanian; Amharic; Arabic; Bangla; Burmese; Dari; Filipino/Tagalog; French/ Hindi; Iindonesian; Korean; Khmer; Lao; Mongolian; Mindanao; Nepali; Pashto; Portuguese; Serbian; Sinhala; Spanish; Tamil; Thai; Urdu; Vietnamese
Access The Global Research Series reports, findings, and data: https://resourcecentre.savethechildren.net/library/hidden-impact-covid-19-children-global-research-seriesType: ReportAccess Notes: Free/Publicly Available
Contact: Please contact the research team (attn: Melissa Burgess or Silvia Mila Arlini) at evidence.aro@savethechildren.org with any questionsIncludes Research Tools: Yes.ID: 23693. From: Disaster Lit®a database of the U.S. National Library of Medicine. -
KFF/The Undefeated Survey on Race and Health
Source: Kaiser Family Foundation (KFF)Date Published: 8/20/2020Format: PDFAnnotation: The Survey on Race and Health, a joint project between KFF and ESPN's The Undefeated, explores the public's views and experiences on the topics of health care, racial discrimination, and the coronavirus pandemic, with a special focus on Black adults, a group that has borne a disproportionate burden of COVID-19 cases and deaths. This survey of 1,769 U.S. adults includes an oversample of 777 Black Americans to allow for in-depth reporting among this group, as well as comparison groups of White and Hispanic adults. This project focuses on African Americans' views and experiences of being Black in America, including views of unconscious bias and structural racism; experiences of discrimination within and outside of health care settings; trust in the health care system; the social and economic impacts of the pandemic; and views of a potential coronavirus vaccine.
Population: Adults Only
African Americans
Mode of Administration: Online (e.g., computer-assisted interview)
Telephone
Language(s): English
Background Website on KFF/The Undefeated Survey on Race and Health https://www.kff.org/racial-equity-and-health-policy/report/kff-the-undefeated-survey-on-race-and-health/
Race, Health, and COVID-19: The Views and Experiences of Black Americans http://files.kff.org/attachment/Report-Race-Health-and-COVID-19-The-Views-and-Experiences-of-Black-Americans.pdf
Infographics
Reports: https://theundefeated.com/tag/race-and-health-care/
Infographic: 13 Key Findings on the Experiences and Attitudes of Black Adults in the U.S. http://files.kff.org/attachment/Infographic-13-Key-Findings-on-the-Experiences-and-Attitudes-of-Black-Adults-in-the-US.pdf
Infographic: The Racial Divide in Health Care Experiences and COVID-19 Impacts http://files.kff.org/attachment/Infographic-The-Racial-Divide-in-Health-Care-Experiences-and-COVID-19-Impacts.pdf...[See more] [See less]Type: Guideline/Assessment ToolAccess Notes: Free/Publicly Available
Available Formats: PDF
Contact Information: Kaiser Family Foundation (KFF) https://www.kff.org/contact-us/; The Undefeated contact@theundefeated.comIncludes Research Tools: Yes.ID: 24235. From: Disaster Lit®a database of the U.S. National Library of Medicine. -
TILDA COVID-19 Self-Completion Questionnaire
Source: Trinity College DublinDate Published: 6/2020Format: PDFAnnotation: This Self-Completion Questionnaire (SCQ) was developed to collect information from participants of The Irish Longitudinal Study on Ageing (TILDA) on the experiences of community-dwelling older adults aged 58 years and older during the COVID-19 pandemic in the Republic Of Ireland. TILDA is a longitudinal cohort studies of community-dwelling older adults that began in 2009. A full description of TILDA and its program of research to date can be accessed at https://tilda.tcd.ie/. The survey was administered in June 2020 and data collection will conclude in September 2020.
Questions Adapted From: The questionnaire includes items used in earlier rounds of TILDA and as such are largely harmonized with other aging cohort studies in the Health and Retirement Study (HRS) family of studies that include the English Longitudinal Study of Ageing (ELSA) and the Survey of Health, Ageing and Retirement in Europe (SHARE).
Population: Adults only
Length: 81 questions
Time to Complete: 30 to 40 minutes
Mode of Administration: Pen and Paper
Administered by: Self Administered
Language(s): English
The Irish Longitudinal Study on Ageing (TILDA) COVID-19 Self-Completion Questionnaire: Full Questionnaire https://www.phenxtoolkit.org/toolkit_content/PDF/TCD_TILDA.pdf
Activities During Covid-19: Home Life; Social Distancing https://www.phenxtoolkit.org/toolkit_content/PDF/TCD_TILDA_Activities.pdf
Health Behaviors: Social Impact; Substance Use; Physical Activity https://www.phenxtoolkit.org/toolkit_content/PDF/TCD_TILDA_Health_Behaviors.pdf
Mental Health: General Mental Health https://www.phenxtoolkit.org/toolkit_content/PDF/TCD_TILDA_Mental_Health.pdf
Work: Employment; Economic Impact https://www.phenxtoolkit.org/toolkit_content/PDF/TCD_TILDA_Work.pdf
State Assistance and Care Giving: Federal Assistance; Home Lifehttps://www.phenxtoolkit.org/toolkit_content/PDF/TCD_TILDA_State_Assistance.pdf
Health Care: Health Care https://www.phenxtoolkit.org/toolkit_content/PDF/TCD_TILDA_Health_Care.pdf
Media: Media Use; Sources of information about COVID-19 https://www.phenxtoolkit.org/toolkit_content/PDF/TCD_TILDA_Media.pdf
Age Discrimination: Attitudes https://www.phenxtoolkit.org/toolkit_content/PDF/TCD_TILDA_Age_Discrimination.pdf
COVID-19 Impact: General Symptoms; Diagnosis https://www.phenxtoolkit.org/toolkit_content/PDF/TCD_TILDA_COVID19_Impact.pdf
General Impact: Overall Impact https://www.phenxtoolkit.org/toolkit_content/PDF/TCD_TILDA_General_Impact.pdf...[See more] [See less]Type: Guideline/Assessment ToolAccess Notes: Free/Publicly Available
Available Formats: PDF
Contact Information:
Dr. Mark Ward
The Irish Longitudinal Study on Ageing (TILDA)
Trinity Central
152-160 Pearse Street A
Trinity College Dublin, the University of Dublin
Dublin 2, D02 R590, Ireland
Email: wardm8@tcd.ieIncludes Research Tools: Yes.ID: 23665. 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. -
Coping with COVID Through Nature: Evidence from Breast Cancer Patients
Source: Michigan State University (MSU)Date Published: 5/18/2020Format: PDFAnnotation: In order to increase physical activity and reduce chronic stress on a population level, researchers and city planners are exploring features of the built environment, including access to urban green space that may promote healthy lifestyles. Parks serve as places to engage in physical activity (PA) in direct contact with nature -- called "green exercise" -- which has been shown to lower perceived stress and risk of chronic disease. In addition, research indicates that passive exposure to green space (e.g., visual, as in the sight of plants and trees, and auditory, as in birdsong) may lower stress. However, many adults may experience barriers to getting outdoors, visiting parks, and engaging in PA during COVID-19 lockdowns, particularly people with compromised immune systems like those living with cancer. Exploring both how and why physical activity and outdoor behaviors have changed can help us to further understand the decision-making process and potential interventions that will benefit the health and well-being of breast cancer patients.
Questions Adapted From: Questions about usage of outdoor spaces were both novel and adapted from University of Minnesota and Kansas State University surveys on outdoor activities during COVID-19. Perceived stress scale from Cohen (Cohen, S., T. Kamarck, and R. Mermelstein, A global measure of perceived stress. Journal of Health and Social Behavior, 1983. 24: p. 385-396). Quality of life questions from PROMIS (Hays, R.D., et al., Development of physical and mental health summary scores from the patient-reported outcomes measurement information system (PROMIS) global items. Quality of life research: an international journal of quality of life aspects of treatment, care and rehabilitation, 2009. 18(7): p. 873-880). Symptom experience from Cleeland (Cleeland, C.S., Symptom burden: multiple symptoms and their impact as patient-reported outcomes. J Natl Cancer Inst Monogr, 2007(37): p. 16-21).
Population: Adults Only
Length: 150 questions, including health and demographic questions
Time to Complete: 20 minutes
Mode of Administration: Online (e.g., computer-assisted interview)
Administered by: Self Administered
Language(s): English
Coping with COVID through nature: Evidence from breast cancer patients and the output from the intake form: Full Questionnaire https://www.phenxtoolkit.org/toolkit_content/PDF/MSU_CWC.pdf
Community Impacts: Physical Activity; Community Access https://www.phenxtoolkit.org/toolkit_content/PDF/MSU_CWC_Community.pdf
Environmental Factors: Nature Appreciation https://www.phenxtoolkit.org/toolkit_content/PDF/MSU_CWC_Enrvironmental.pdf
Mental Health: General Mental Health https://www.phenxtoolkit.org/toolkit_content/PDF/MSU_CWC_Mental_Health.pdf
Cancer Impact: Non-COVID-19 Symptoms and Medicines https://www.phenxtoolkit.org/toolkit_content/PDF/MSU_CWC_Cancer.pdf
Personal Demographics: Personal Demographics; Health Care https://www.phenxtoolkit.org/toolkit_content/PDF/MSU_CWC_Demographics.pdf...[See more] [See less]Type: Guideline/Assessment ToolAccess Notes: Permission/Request required
Citation(s):
Licensing required for the MDAIS questions only. All other questions freely available.
Available Formats: PDF
Contact Information: Amber Pearson
Michigan State University
apearson@msu.eduIncludes Research Tools: Yes.ID: 22691. From: Disaster Lit®a database of the U.S. National Library of Medicine. -
Coping with COVID-19: Impact on technology use, mobility, food security, depression and social isolation
Source: University of Florida (UF)Date Published: 5/2020Format: PDFAnnotation: The purpose of this study is to remotely survey older adults about their behaviors, social activities, food security, depression, technology use, and mobility patterns prior to and after the COVID-19 outbreak. We will also ask about practicing COVID-19 precautions during outbreak. This survey knowledge will be critical for targeting educational, policy and behavioral interventions designed to regain and/or modify older adults life activities post-COVID-19. Potential participants will either enter or click on the weblink to access the survey. The front page will contain the following information: broad purpose, optional nature of the survey, amount of time the survey takes, HIPAA compliances, risks, privacy, and research staff contact information in case of questions. The survey is approximately 200 questions depending on responses and skip patterns. It takes about 30-45 minutes to complete. The surveys are broken into logical domains and are ordered in the manner to capture the most important information first. Questions under each module listed below represent elements of validated surveys from PROMIS and others in the literature. Some have been modified to capture changes since the COVID-19 outbreak. The bottom of each module contains a “submit” button at which time the data are saved.
Questions Adapted From: Some questions are adapted from PROMIS measures.
Population: Adults Only
Length: 200 questions
Time to Complete: 30-45 minutes
Mode of Administration: Online (e.g., computer-assisted interview)
Special considerations for Administration: must be taken online at https://redcap.ctsi.ufl.edu/redcap/surveys/index.php?s=Y8LL3DFYCK
Administered by: Self Administered
Language(s): English
Coping with COVID-19: Impact on technology use, mobility, food security, depression and social isolation https://www.phenxtoolkit.org/toolkit_content/PDF/Coping.with.COVID19.pdf
Mobility Due To COVID: Physical Activity https://www.phenxtoolkit.org/toolkit_content/PDF/UFl_Coping_with_COVID19_Mobility.pdf
Technology Telehealth Use During COVID: Media Use; Telehealth https://www.phenxtoolkit.org/toolkit_content/PDF/UFl_Coping_with_COVID19_Technology.pdf
Life-space Mobility During COVID: Mental Health https://www.phenxtoolkit.org/toolkit_content/PDF/UFl_Coping_with_COVID19_Life_Space.pdf
Mood and Sleep During COVID: Mental Health; Sleep Changes https://www.phenxtoolkit.org/toolkit_content/PDF/UFl_Coping_with_COVID19_Mood.pdf
Socialization During COVID: Social Impact https://www.phenxtoolkit.org/toolkit_content/PDF/UFl_Coping_with_COVID19_Socialization.pdf
Physical Activity During COVID: Physical Activity; Daily Life https://www.phenxtoolkit.org/toolkit_content/PDF/UFl_Coping_with_COVID19_Physical.pdf
Other Activities During COVID: Overall Impact https://www.phenxtoolkit.org/toolkit_content/PDF/UFl_Coping_with_COVID19_Other.pdf
Food Access During COVID19: Food Security https://www.phenxtoolkit.org/toolkit_content/PDF/UFl_Coping_with_COVID19_Food.pdf
Thoughts and Feelings About COVID-19 (open ended): Overall Impact https://www.phenxtoolkit.org/toolkit_content/PDF/UFl_Coping_with_COVID19_Thoughts.pdf...[See more] [See less]Type: Guideline/Assessment ToolAccess Notes: Free/Publicly Available
Available Formats: PDF
Contact Information:
Todd M. Manini, Ph.D., FACSM FGSA
tmanini@ufl.edu
Associate Professor
Dept. of Aging and Geriatric Research
Institute on Aging
University of Florida College of Medicine
Survey: https://redcap.ctsi.ufl.edu/redcap/surveys/index.php?s=Y8LL3DFYCKIncludes Research Tools: Yes.ID: 22355. From: Disaster Lit®a database of the U.S. National Library of Medicine.REDCap: Yes. -
COVID-19 Experiences (COVEX)
Source: Columbia UniversityDate Published: 5/2020Format: PDFAnnotation: The COVID-19 Experiences (COVEX) questionnaire was developed by investigators from the Division of Child and Adolescent Psychiatry at Columbia University/New York State Psychiatric Institute for use in our ongoing and new research studies and by affiliated clinical settings to document the experiences of research participants and patients in the time of the COVID-19 pandemic. COVEX can be administered either as an interview or as a self-report measure. It is being translated in other languages.
Section 1: COVID-19 Symptoms & Diagnoses Section 2: Vulnerability to COVID and Direct Exposure Section 3: Living Situation Section 4: Employment/School Changes Section 5: Worries, Mental Health Changes Section 6: Problems and Support during COVID-19 outbreak Section 7: Coping Section 8: Pregnancy-Related Questions (optional) Section 9: Media Use
Questions Adapted From: The following measures were adapted for the development of this survey:
* Harkness, A. (2020). The Pandemic Stress Index. University of Miami.
o Section 5 (7a, 7b, 7c, 7j)
o Section 6 (2, 3)
* Kroenke, K. & Spitzer, R.L. (2002). The PHQ-9: A new depression and diagnostic severity measure.
o Section 5 (1a-1i, 4a-4i)
* Kroenke K, Spitzer RL, Williams JB, Monaha PO, Lowe B. Anxiety disorders in primary care: prevalence, impairment, comorbidity, and detection. Ann Intern Med. 2007;146:317-25.
o Section 5 (1j, 1k, 4j, 4k)
* [KFF Coronavirus Poll (conducted March 11-15, 2020)], (KFF, [March 17, 2020]), (http://files.kff.org/attachment/Topline-KFF-Coronavirus-Poll.pdf, accessed March 31, 2020)]
o Section 5 (8, 9)
* Featherstone, J. D., Bell, R. A., & Ruiz, J. B. (2019). Relationship of people's sources of health information and political ideology with acceptance of conspiratorial beliefs about vaccines. Vaccine, 37(23), 2993-2997.
o Section 9 (4)
Population: Adult Workers
Adults and Teens
Adults Only
Children/Teens Only
High Risk/Special/Unique Populations
Pregnant or Lactating Women
Residential/Workplace
Length: ~189 questions
Time to Complete: 30 minutes (interview format)
Mode of Administration: Face-to-face
Online (e.g., computer-assisted interview)
Pen and Paper
Telephone
Administered by: Lay Interviewer
Self Administered
Language(s): English, Spanish, Portuguese
COVID-19 Experiences (COVEX): Full Questionnaire https://www.phenxtoolkit.org/toolkit_content/PDF/Fisher_COVEX.pdf
COVID-19 Symptoms & Diagnoses: Symptoms; Diagnosis https://www.phenxtoolkit.org/toolkit_content/PDF/Fisher_COVEX_Symptoms.pdf
Vulnerability to COVID and Direct Exposure: Substance Use; Exposure https://www.phenxtoolkit.org/toolkit_content/PDF/Fisher_COVEX_Vulnerability.pdf
Changes in Living Situation due to COVID: Home Life https://www.phenxtoolkit.org/toolkit_content/PDF/Fisher_COVEX_Living_Situation.pdf
Changes in Employment/School due to COVID: Employment; Education https://www.phenxtoolkit.org/toolkit_content/PDF/Fisher_COVEX_Employment_Education.pdf
Worries, Mental Health Changes due to COVID: Mental Health; Substance Use https://www.phenxtoolkit.org/toolkit_content/PDF/Fisher_COVEX_Worries.pdf
Problems and Support during COVID-19 outbreak: Resources; Health Care https://www.phenxtoolkit.org/toolkit_content/PDF/Fisher_COVEX_Problems.pdf
Coping with COVID: Mental Health; Positive Impacts https://www.phenxtoolkit.org/toolkit_content/PDF/Fisher_COVEX_Coping.pdf
Pregnancy-Related during COVID: Current Pregnancy; Past Pregnancy https://www.phenxtoolkit.org/toolkit_content/PDF/Fisher_COVEX_Pregnancy.pdf
Media Use during COVID: Media Use; Sources of information about COVID-19 https://www.phenxtoolkit.org/toolkit_content/PDF/Fisher_COVEX_Media.pdf...[See more] [See less]Type: Guideline/Assessment ToolAccess Notes: Free/Publicly Available
Link to Spanish language translation: https://disasterinfo.nlm.nih.gov/content/files/COVEX_Final_SpanishVersion_rev.pdf
Link to Portuguese language translation: https://disasterinfo.nlm.nih.gov/content/files/COVEX_pt_Brazil_Portuguese_v1.1_july2020.pdf
Contacts:
Lead Tool Developers Contact Information:
Dr. Prudence Fisher (prudence.fisher@nyspi.columbia.edu)
Dr. Cristiane Duarte (cristiane.duarte@nyspi.columbia.edu)
New York State Psychiatric Institute & Columbia University Irving Medical Center
Available Formats: PDF
Citation Fisher, P.W., Desai, P., Klotz, J., Turner, J.B., Reyes-Portillo, J.A., Ghisolfi, I., Canino, G., and Duarte, C.S. (2020) COVID-19 Experiences (COVEX).Includes Research Tools: Yes.ID: 22357. From: Disaster Lit®a database of the U.S. National Library of Medicine. -
JHU COVID-19 Community Response Survey
Source: Johns Hopkins University, Bloomberg School of Public HealthDate Published: 4/25/2020Format: PDFAnnotation: The goal of this toolkit is to provide a set of standardized quantitative and qualitative assessments to harmonize data collection efforts and facilitate comparisons of the impact of the novel coronavirus (COVID-19), and promote collaborations across research efforts. This is intended to be a dynamic resource that will evolve as the epidemic does. These modules were created with a broad sample in mind. The goal was to develop a set of modules that could be applied to multiple populations with some minor tweaks. They can be used cross-sectionally or longitudinally and are designed for a newly selected sample (e.g., include information on basic demographics). The survey asks questions about possible exposure to the virus, experiences with testing and treatment, and some questions about how life has changed as a result of COVID-19 and the preventive measures that have been put in place.
Population: Adults only
Length: 148 items
Time to Complete: 20-30 minutes
Administered by: Trained Lay Examiner/Interviewer
Language(s): English
COVID-19 Community Response Survey: Full Questionnaire https://www.phenxtoolkit.org/toolkit_content/PDF/JHU_C4WARD.pdf
Knowledge and attitudes toward COVID19: Knowledge; Perceived Threat https://www.phenxtoolkit.org/toolkit_content/PDF/JHU_C4WARD_Perceived_Threat.pdf
COVID19 symptoms and testing experience: Symptoms; Diagnosis https://www.phenxtoolkit.org/toolkit_content/PDF/JHU_C4WARD_Diagnosis.pdf
COVID19 and Co-morbidities and care engagement: Health Care; Chronic Health Conditions https://www.phenxtoolkit.org/toolkit_content/PDF/JHU_C4WARD_Health.pdf
COVID19 and Mental health impacts: Mental Health https://www.phenxtoolkit.org/toolkit_content/PDF/JHU_C4WARD_Mental_Health.pdf
COVID19 impact and pandemic stress: Overall Impact https://www.phenxtoolkit.org/toolkit_content/PDF/JHU_C4WARD_Impact.pdf
COVID19 and Social distancing: Social Distancing; Social Impact https://www.phenxtoolkit.org/toolkit_content/PDF/JHU_C4WARD_Social_Distancing.pdf
COVID19 and Violence and trauma: Violence; Fear of Violence https://www.phenxtoolkit.org/toolkit_content/PDF/JHU_C4WARD_Violence_Trauma.pdf
COVID19 and Substance use: Substance Use https://www.phenxtoolkit.org/toolkit_content/PDF/JHU_C4WARD_Substance_Use.pdf
COVID19 and Sexual behavior: Sexual Behavior https://www.phenxtoolkit.org/toolkit_content/PDF/JHU_C4WARD_Sexual_Behavior.pdf...[See more] [See less]Type: Guideline/Assessment ToolAccess Notes: Available Formats: PDF
Free/Publicly Available
Contact Information: Shruti Mehta, PhD, MPH, Professor and Deputy Chair Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health: smehta@jhu.eduIncludes Research Tools: Yes.ID: 22096. From: Disaster Lit®a database of the U.S. National Library of Medicine.
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