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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 Technology Accessibility Survey
Source: National Alzheimer’s Coordinating Center (NACC)Date Published: 7/2/2020Format: PDFAnnotation: The COVID-19 Technology Accessibility Survey is designed to learn about the range of technological tools available to participants in the clinical cores of the National Institute on Aging (NIA) Alzheimer's Disease Research Centers (ADRCs) and the level of comfort participants have with them. The goal is to support and expand the remote assessment capabilities of the ADRCs to administer the Uniform Data Set when in-person assessment is not possible.
Population: Adults Only
Length: 4 questions
Time to Complete: 5 minutes
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...[See more] [See less]Type: Guideline/Assessment ToolAccess Notes: Permission/Request required; Direct link to document: https://www.alz.washington.edu/NONMEMBER/Covid-tech-survey.pdf
Available Formats: PDF
Contact Information: National Alzheimer's Coordinating Center, Elizabeth Robichaud, naccmail@uw.edu
Created by the NIA ADRC Clinical Task Force, Allan Levey, MD, PhD, ChairIncludes Research Tools: Yes.ID: 23180. From: Disaster Lit®a database of the U.S. National Library of Medicine. -
COVID Response Tactics Sharing - Healthcare Engineering: Instrument to Measure and Compare the Tangible COVID Protection Activities Completed by Healthcare Facilities
Source: American Society for Health Care Engineering (ASHE)Date Published: 6/26/2020Format: PDFAnnotation: At the start of the COVID crisis, hospitals wrestled with the best ways to adapt existing infrastructure to best protect patient and staff health, and to expand critical clinical space to meet patient surge needs. The COVID Response Tactics Sharing (CRTS) survey instrument and reporting project was created to allow health care engineering professionals the ability to report the tangible changes they made to prepare their health care organizations for the COVID response, and to compare themselves with others on these activities. This survey was created, fielded and continues to be reported by researchers within the American Society of Health Care Engineering (ASHE), which is a professional membership group of the American Hospital Association. This tool was first created and deployed June of 2020 and measures strategic decision-making and the concrete COVID related activities of health care engineers (e.g., social distancing protections, conversion of spaces to negative pressure, creation of alternate health care spaces, regulatory impacts). Since its deployment, more than 1,500 different health care facilities have participated in the survey. The survey will continue data collection throughout the crisis, and for those interested in participating as part of the ASHE effort, regular reporting is offered so that organizations can better understand the strategy and resulting impacts (patient protections, financial) of critical health care engineering activities allowing this information to applied for future emergencies. Those interested in using the survey questions are also invited to do so as long as ASHE and the American Hospital Association are cited.
Questions Adapted From: The survey was created by the American Society for Healthcare Engineering (ASHE: a part of the American Hospital Association). A research methodologist consulted with SMEs in the field of health care engineering and experts in emergency preparedness and communicable infectious diseases to ensure that questions were created that would capture the data needed to yield actionable information on preparedness efforts. Given that America has not seen a pandemic in over 100 years and that information on how the health care environment (particularly pressurization of spaces) influenced spread, this field had to react quickly to prepare the physical environment for patient surge. The questions in the survey collect this information and can be segmented by time, hospital type and geographical location to provide insight for future disasters of this kind.
Includes Common Data Elements From: No
Population: Health care organizations
Length: 170 items* However, not all items will apply to all audiences. If respondent organizations did not perform these tasks, the survey is much shorter.
Time to Complete: Approximately 20 minutes
Mode of Administration: Online (e.g., computer-assisted interview)
Administered by: Self Administered/Self Report
Special Considerations: There are two options for participation. 1) Organizations can choose to click ASHE's direct link to the survey here: Clicking this link and participating in the survey enrolls respondent organizations in ASHE CRTS survey and reporting project. Respondent organization's that choose to participate in this way will receive updated reports based on the results. 2) Organizations can utilize the data dictionary to select question items. Please cite the American Society for Health Care Engineering, and the American Hospital Association. Please also consider contacting ASHE for opportunities to collaborate.
Language(s): English
Find additional documentation: https://www.ashe.org/CRTSType: Guideline/Assessment ToolAccess Notes: Free/Publicly Available
Citation(s):
Walt, Lisa. “ASHE research highlights the field's response to COVID-19” Health Facilities Management November/December 2020 Cover Story. https://www.hfmmagazine.com/articles/4059-ashe-research-highlights-the-fields-response-to-covid-19
COVID Response Tactics Sharing (CRTS) 2020: Brief Report https://www.ashe.org/system/files/media/file/2020/11/ashe_crts_survey_report-FINAL.pdf
Available Formats: PDF
Contact Information: Lisa Walt, PhD; Email: lwalt@aha.orgIncludes Research Tools: Yes.ID: 24227. From: Disaster Lit®a database of the U.S. National Library of Medicine. -
Social Risk Factors for COVID-19 Exposure Questionnaire
Source: Harvard University, Harvard T.H. Chan School of Public HealthDate Published: 5/21/2020Format: PDFAnnotation: This is a self-report, online-based questionnaire designed for use with seropositivity testing and administered via Qualtrics to assess exposure to COVID-19 and modifying factors, such as mask usage, in: (1) the residence and household; (2) while taking transportation; and (3) through work and employment. Modules included in survey: I. Introduction. The first section includes three questions related to concerns about exposure to COVID-19 in the home, while using typical forms of transportation, and in the workplace (questions 2 through 4). II. About You. This second section includes up to 13 questions on demographic factors and the survey-taker's experience with COVID-19 testing (questions 6 through 18). III. Residence and Household. This third section includes up to 14 questions about the type and size of the residence, number and ages of other household members, and COVID-19 infection histories of the other household members (questions 20 through 33). IV. Transportation. This fourth section includes up to seven questions about the frequency of activities outside of the home (work/employment, outdoor exercise and recreation, essential errands, and personal and social activities), and the type of transportation used for those activities. If the survey-taker reports use of public transportation, they are asked about mask usage and social distancing while on public transportation (questions 35 through 41). V. Work and Employment (General). This section includes up to four questions about occupation, industry, and work for pay since the beginning of the COVID-19 pandemic (questions 43 through 46). VI. Work and Employment (Work Outside the Home). This section includes up to 13 questions focusing on work outside the home. In particular, survey-takers are asked about hours worked per week, the percent of remote work performed, contact with the public, contact with co-workers, PPE usage, and employer COVID-19 policies (questions 47 through 59).
Questions Adapted From: Q11, Q23, Q46 - American Community Survey; Q9, Q10, Q12, Q13, Q24, Q43, Q44 - U.S. Census Bureau 2020 COVID-19 Household Pulse Survey; Q7, Q8, Q18, Q25 - John Hopkins University COVID-19 Community Response Survey
Population: Adults only
Length: 59 questions
Time to Complete: 15-30 minutes
Mode of Administration: Online (e.g., computer-assisted interview)
Administered by: Self Administered
Language(s): English...[See more] [See less]Type: Guideline/Assessment ToolAccess Notes: Free/Publicly Available
Format: Qualtrics Survey Format (QSF)
Citation(s):
Suggested citation: Accorsi, E.K., Cowger, T., Lipsitch, M. (2020). Social Risk Factors for COVID-19 Exposure Questionnaire.
Contact Information:
Marc Lipsitch, DPhil
Professor of Epidemiology
Director, Center for Communicable Disease Dynamics
Harvard T.H. Chan School of Public Health
Email: mlipsitc@hsph.harvard.edu
Emma Accorsi, PhD Candidate
Harvard T.H. Chan School of Public Health
Email: eaccorsi@g.harvard.eduIncludes Research Tools: Yes.ID: 23536. 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. -
ABCD COVID-19 Impact Measure
Source: University of California, San Diego (UCSD)Date Published: 5/2020Format: PDFAnnotation: The COVID-19 Impact Measure was created to be administered to the participants of the NIH-sponsored Adolescent Brain and Cognitive Development (ABCD) longitudinal study of 11,880 diverse community youth enrolled at age 9-10 in 2016-2018 (i.e., birth years 2006-2009) at 21 research sites around the United States. The ABCD sample (63% White, 20% Latinx, 16% Black, 12% more than one race, 2% Asian, <1% American Indian, <1% Pacific Islander; half female) was targeted to match U.S. demographics as defined by the American Community Survey and is being followed until at least age 20. ABCD will send all currently enrolled participants (age range: 11-13) and their parent/guardian the opportunity to complete the ABCD COVID-19 questionnaires. The questionnaires will be administered once a month for four months. Each participant and their parent/guardian will be emailed a unique secure link to the parent and child forms to complete the survey in REDCap. Compensation will be provided upon receipt of the completed form. These measures were developed by a workgroup consisting of ABCD investigators with expertise in adolescent development, mental health, sleep, physical activity, substance use, and disaster response, and the electronic surveys underwent preliminary testing via expert review and pilot testing with adults and children.
Note the Parent Measures contain the English and Spanish wording. The Parent Measure appears in two parts to accommodate parents who have more than one child in the ABCD Study (our design intentionally oversampled identical twins): Part 1 consists of questions that pertain to parent and family factors; Part 2 consists of questions pertaining to each child they have in the study. ABCD's COVID-19 research sends the measure multiple times over several months in 2020; to reduce participant burden, some items have skip-out branching logic and other items are given at one or two survey administrations and other items are administered each time (noted in comments in the measure PDFs).
Domains included in the measure:
* Family Situation: Home composition, economic impact, illness, parent support
* Youth's Schooling: quality, quantity, methods, and supervision
* Youth's Routine and Sleep
* Relationships: friends and family
* COVID Attitudes and Adherence (to public health directives)
* Mental Health and Stress: depression, anxiety, worry, post-traumatic stress
* Substance Use: alcohol, vaping of nicotine and cannabis, other intoxicants
* Screen Use: for school, socializing, other reasons
* Media Exposure to COVID-19
* Physical Health: activity, food access, COVID-19 symptoms
Population: Adults Only
Children/Teens Only
Length: ~85-90 items (Youth)* ; ~80-90 items (Parent) *Note: both measures have skip-out branching logic and not all questions may be asked to all participants.
Time to Complete: 10-15 minutes
Mode of Administration: Online (e.g., computer-assisted interview)
Administered by: Self Administered
Language(s): English, Spanish (Parent)
ABCD COVID-19 Impact Measure - Parent Questionnaire https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Parent.pdf
Family Situation: Economic Insecurity; Avoidant Behaviors https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Parent_Family.pdf
Youth's Schooling: Education https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Parent_Schooling.pdf
Youth's Routine and Sleep: Physical Activity; Sleep Changes https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Parent_Routine.pdf
Relationships: Family Impact; Hygiene; Social Impact https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Parent_Relationships.pdf
COVID Attitudes & Adherence: Conflict; Attitudes https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Parent_Attitudes.pdf
Mental Health & Stress: Mental Health; Stress https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Parent_Mental_Health.pdf
Substance Use: Substance Use https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Parent_Substance_Use.pdf
Screen Use: Media Use https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Parent_Screen_Use.pdf
Media Exposure to COVID-19: Sources of information about COVID-19 https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Parent_Media_Exposure.pdf
Physical Health: Symptoms; Diagnosis; Health Care https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Parent_Physical_Health.pdf
ABCD COVID-19 Impact Measure - Youth Questionnaire https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Youth.pdf
School Schedule: Education https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Youth_School.pdf
Youth's Routine and Sleep: Sleep Changes https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Youth_Routine_and_Sleep.pdf
Parents/Guardians: Home Life https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Youth_Guardians.pdf
Relationships: Family Impact; Social Impact https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Youth_Relationships.pdf
Mental Health & Stress: Mental Health https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Youth_Mental_Health_Stress.pdf
Substance Use: Substance Use https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Youth_Substance_Use.pdf
Media Exposure to COVID-19: Sources of information about COVID-19 https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Youth_Media.pdf
Screen Use: Media Use https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Youth_Screen_Use.pdf
Physical Health: Physical Activity https://www.phenxtoolkit.org/toolkit_content/PDF/UCSD_ABCD_Youth_Physical_Health.pdf...[See more] [See less]Type: Guideline/Assessment ToolAccess Notes: Free/Publicly Available Youth Survey: https://www.nlm.nih.gov/dr2/ABCD_COVID-19_Impact_Measure-Youth.pdf
Available Formats: PDF
Contact Information:
Susan Tapert, PhD.
abcd-covid@ucsd.eduIncludes Research Tools: Yes.ID: 22354. From: Disaster Lit®a database of the U.S. National Library of Medicine.REDCap: Yes. -
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. -
UK COVID-19 Questionnaire
Source: Wellcome TrustDate Published: 5/2020Format: PDFAnnotation: In this questionnaire, we ask about self-isolation, social distancing, and what you have been doing during lockdown. By self-isolation, we mean not leaving home for any reason and possibly keeping away from other members of your household (if you or they are showing symptoms). By social distancing, we mean minimizing contact with other people outside the home. By lockdown, we are referring to the announcement made in the United Kingdom by the government on March 23, 2020, to stay at home, except for very limited purposes. Includes questions related to health, behavior change, economic impact, social impact, and environmental changes.
Questions Adapted From: Questions developed by existing UK cohorts: ALSPAC, South Asia Biobank, COSMOS/SCAMP/Airwave, National blood donor cohort, SAPRIN, EXCEED, TwinsUK, Born in Bradford, Generation Scotland, ELSA, CLS cohorts. These and other studies have used some or all of the questions within their cohorts.
Population: Adults only
Length: 107 questions
Mode of Administration: Online (e.g., computer-assisted interview)
Administered by: Self Administered
Language(s): English
UK COVID19 Questionnaire: Full Questionnaire https://www.phenxtoolkit.org/toolkit_content/PDF/WT_UK_COVID19.pdf
COVID Related Health Questions: Symptoms; Status; Mental Health; Non-COVID-19 Symptoms and Medicines https://www.phenxtoolkit.org/toolkit_content/PDF/WT_UK_COVID19_Health.pdf
Behaviour Change and Knowledge Due to COVID-19: Overall Impact; K-12 Education Impact; Knowledge https://www.phenxtoolkit.org/toolkit_content/PDF/WT_UK_COVID19_Behaviour.pdf
Economic Impact Due to COVID-19: Economic Insecurity; Employment https://www.phenxtoolkit.org/toolkit_content/PDF/WT_UK_COVID19_Economic.pdf
Social Impact Due to COVID-19: Social Impact; Home Life https://www.phenxtoolkit.org/toolkit_content/PDF/WT_UK_COVID19_Social.pdf
Environmental Changes Due to COVID-19: Housing Security https://www.phenxtoolkit.org/toolkit_content/PDF/WT_UK_COVID19_Environmental.pdf...[See more] [See less]Type: Guideline/Assessment ToolAccess Notes: Includes a core questionnaire with additional suggested questions.
This questionnaire has been formatted into REDCap and Qualtrics and is available for any study to use. Interested researchers should contact us at alspac-exec@bristol.ac.uk
Available Formats: PDF
Contact Information: Lynn Molloy: alspac-exec@bristol.ac.ukIncludes Research Tools: Yes.ID: 22361. From: Disaster Lit®a database of the U.S. National Library of Medicine.REDCap: Yes. -
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. -
Mental Health Impact of COVID-19 Pandemic on NIMH Research Participants and Volunteers Protocol
Source: National Institute of Mental Health [National Institutes of Health] (NIMH)Date Published: 4/20/2020Format: PDFAnnotation: This protocol provides the rationale, background, objectives, design, methodology, statistical considerations, organization for the National Institute of Mental Health Psychosocial Impact of COVID-19 Survey: https://dr2.nlm.nih.gov/search/?q=22587
Abbreviated title: MINH COVID Study...[See more] [See less]Type: Study Design/ProtocolAccess Notes: Contact Information:
Study team: NIMHResearchVolunteer@nih.gov
Joyce Chung, MD, National Institute of Mental Health (NIMH) Intramural Research Program, joyce.chung@nih.govIncludes Research Tools: Yes.ID: 24225. From: Disaster Lit®a database of the U.S. National Library of Medicine.
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