Bernard, Alec

D\u27Souza, Clive

Edwards, Paul

Ehrlich, Joshua R

McKee, Michael M

Meade, Michelle

Panzer, Kate

Riddering, Anne

Salgat, Anah

Stein, Joshua D

Ulin, Sheryl S

Weiss, Sara

English

Henry Ford Health System Scholarly Commons

Henry Ford Health System Henry Ford Health System Scholarly Commons Ophthalmology Articles Ophthalmology and Eye Care Services 7-23-2020 Assessing the impact of COVID-19 on persons with disabilities: development of a novel survey Alec Bernard Sara Weiss Joshua D. Stein Sheryl S. Ulin Clive D'Souza See next page for additional authors Follow this and additional works at: https://scholarlycommons.henryford.com/ophthalmology_articles Authors Alec Bernard, Sara Weiss, Joshua D. Stein, Sheryl S. Ulin, Clive D'Souza, Anah Salgat, Kate Panzer, Anne Riddering, Paul Edwards, Michelle Meade, Michael M. McKee, and Joshua R. Ehrlich HINTS & KINKSAssessing the impact of COVID-19 on persons with disabilities:development of a novel surveyAlec Bernard1 • Sara Weiss2 • Joshua D. Stein2,3,4 • Sheryl S. Ulin5 • Clive D’Souza5 • Anah Salgat6 •Kate Panzer6 • Anne Riddering7 • Paul Edwards7 • Michelle Meade3,8,9 • Michael M. McKee3,6,8 •Joshua R. Ehrlich2,3,8Received: 18 May 2020 / Revised: 5 July 2020 / Accepted: 9 July 2020 Swiss School of Public Health (SSPH+) 2020The novel coronavirus (COVID-19) pandemic andaccompanying disease-mitigation measures have had anunprecedented global impact. As of the time of writing, theWHO identifies over 10.1 million global cases (2.5 millionUS) and more than 500,000 fatalities (126,000 US) (WorldHealth Organization 2020a, b; Centers for Disease Control2020).The WHO defines disability as ‘‘any condition of thebody or mind that makes it more difficult for the personwith the condition to do certain activities and interact withthe world around them’’ (World Health Organization2020a, b). Even prior to the COVID-19 pandemic, personswith disabilities (PWD) were at greater risk for difficultiesaccessing healthcare, performing instrumental activities ofdaily living, and maintaining financial well-being (Kweon2020; Lenze et al. 2001; Garberoglio et al. 2016; Gopinathet al. 2012; World Health Organization 2001, 2011). Theimpact of the COVID-19 on PWD has not been welldescribed, and it is not known whether the pandemic isdisproportionally creating challenges for PWD. Mitigationmeasures currently in place across the globe are likely toexacerbate many psychological, financial, and day-to-daychallenges (Gershman 2020).Recently, scientific publications and advocacy groupshave provided broad recommendations to limit the impactof the pandemic on PWD (Allen and Smith 2020; Senjam2020; Kessler Foundation 2020; National Association ofthe Deaf 2020; Rogers 2020). However, there are little datato quantify the impact of the pandemic on PWD, and athorough review of existing survey instruments demon-strated a clear gap in available instruments to assess theimpact on PWD. While long-standing rigorously validatedsurvey instruments like the WHO Model Disability Surveyare commonly used in disability survey research, existinginstruments may lack content validity since they were notdeveloped with this unprecedented global stressor in mind(World Health Organization 2020a, b). We also reviewedall COVID-19 surveys cataloged on the PhenX Toolkitwebsite (Hamilton et al. 2011); however, there was nosingle instrument that appeared well targeted to PWD.Accordingly, the decision was made to undertake thedevelopment of a novel survey instrument to conductresearch specific to the impact of COVID-19 on PWD.Given the highly specific nature of this construct, webelieve that this new instrument was needed in order tooptimize key measurement properties like content andconstruct validity (Terwee et al. 2007).We therefore developed a novel survey instrument, theCoronavirus Disability Survey (COV-DIS), for the purposeof assessing the impact of the COVID-19 pandemic and& Joshua R. Ehrlichjoshre@med.umich.edu1 University of Michigan Medical School, Ann Arbor, MI,USA2 Department of Ophthalmology and Visual Sciences,University of Michigan, 1000 Wall Street, Ann Arbor,MI 48103, USA3 Institute for Healthcare Policy and Innovation, University ofMichigan, 1000 Wall Street, Ann Arbor, MI 48103, USA4 Department Health Policy and Management, School of PublicHealth, University of Michigan, Ann Arbor, MI, USA5 Center for Ergonomics, Department of Industrial andOperations Engineering, University of Michigan, Ann Arbor,MI, USA6 Department of Family Medicine, University of Michigan,Ann Arbor, MI, USA7 Department of Ophthalmology, Henry Ford Health System,Detroit, MI, USA8 Center for Disability Health and Wellness, University ofMichigan, 1000 Wall Street, Ann Arbor, MI 48103, USA9 Department of Physical Medicine and Rehabilitation,University of Michigan, Ann Arbor, MI, USA123International Journal of Public Healthhttps://doi.org/10.1007/s00038-020-01433-z(0123456789().,-volV)(0123456789().,-volV)related disease-mitigation measures on PWD. The surveyincludes items to assess general and psychological health,instrumental activities of daily living, social isolation,financial strain, and information and transportation access.The 34-item COV-DIS was developed by consensus of agroup of experts from the fields of survey research, phys-ical medicine and rehabilitation, family medicine, oph-thalmology, and industrial and operations engineering. Allexperts on the panel had extensive expertise in disabilityresearch and/or the clinical care of PWD. The panel draftedand iteratively refined relevant novel survey items. Addi-tionally, based on the review of existing instruments, sev-eral items were drawn from other surveys. Items wereincluded from the: CDC COVID-19 Community Survey,Osteoporotic Fractures in Men Study (MROS) and Study ofMuscle Mobility and Aging (SOMMA) (Ware and Sher-bourne 1992), Understanding America Study (Orwoll et al.2005), 36-item Short-Form Survey (SF-36) (Hays et al.1993), and Patient Health Questionnaire-2 (PHQ-2)(Kroenke et al. 2003). Responses to these items cantherefore be easily harmonized with data from their parentstudies in order to make comparisons between populations.For example, studies from which several of the COV-DISitems were drawn make data publicly available. Data maybe directly compared between a study conducted with theCOV-DIS and publicly available data (e.g., a nationalsample in the Understanding America Study). Items fromvalidated instruments such as the SF-36 and the PHQ-2 canalso be compared to data from national samples collectedin large epidemiological studies (e.g., the Health andRetirement Study or the National Health and Aging TrendsStudy).Various COV-DIS items allow for the input of free textto describe the unique experience of respondents. Ques-tions ask respondents to compare current experiences totheir experiences prior to becoming aware of the pandemic.This approach may be relevant to the current phase of thepandemic. However, the nature of the pandemic and miti-gation measures is likely to change in unpredictable ways.Therefore, it is likely that there will be a need for futureusers of the COV-DIS to modify question stems in order tospecify a timeframe of interest.We are presently utilizing the COV-DIS to carry outresearch on the impact of COVID-19 on PWD in southeastMichigan, USA, an area strongly affected by the pandemic(The New York Times 2020). Data will be analyzed todetermine the psychometric properties of the COV-DIS andto obtain critical insights into how the COVID-19 pan-demic and disease-mitigation measures are affecting thehealth and well-being of PWD in this region.The COV-DIS represents a novel instrument to facilitatean urgent research need. However, there are several limi-tations. Since results of the initial administration of theCOV-DIS are not yet available, the measurement proper-ties of the survey are not known. Additionally, qualitativeresearch was not performed among PWD in order to informinstrument development. Nonetheless, these limitations aredue to what we believe was the need to rapidly develop anddisseminate a highly relevant survey instrument to enablemeaningful research that may benefit the lives of PWDduring the COVID-19 pandemic.In developing and making the COV-DIS freely andpublicly available (https://osf.io/p2w9j/.), we hope to pro-mote opportunities for harmonization of data across diversestudy populations. Studies using the COV-DIS may have alarge impact by providing needed insights to shape data-driven public health and policy decisions that have thepotential to optimize the health and well-being of PWDnow, during possible future waves of COVID-19 infection,and during other future high-impact societal stressors.Acknowledgements None.Author contributions JRE contributed to the concept of the study.JRE, AB, SW, JS, SU, CD, AS, KP, AR, PE, MM, and MMM con-tributed to the design of the study. AB and JRE contributed to draftingof the manuscript. All authors contributed to the review and editing ofthe manuscript.Funding Funding was provided by an unrestricted grant from theLighthouse Guild to the University of Michigan Department ofOphthalmology and Visual Sciences. JRE is supported by a grantfrom the National Institutes of Health (K23EY027848). This workwas supported by a grant to AB from the Michigan Institute forClinical and Health Research with funding provided by the NationalInstitutes of Health (TL1TR002242).Compliance with ethical standardsConflict of interest The authors declare that they have no conflict ofinterest.Ethical approval All procedures that will be performed in studiesinvolving human participants will be in accordance with the ethicalstandards of the institutional committee (University of MichiganInstitutional Review Board (IRBMED), HUM00179203) and with the1964 Declaration of Helsinki and its later amendments or comparableethical standards.Informed consent Informed consent will be obtained from all indi-vidual participants to be included in the survey. This study currentlyincludes no human subjects.ReferencesAllen PM, Smith L (2020) SARS-CoV-2 self-isolation: recommen-dations for people with a vision impairment. 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Accessed 30 June 2020World Health Organization (2020b) Coronavirus. https://www.who.int/emergencies/diseases/novel-coronavirus-2019. Accessed 30June 2020Publisher’s Note Springer Nature remains neutral with regard tojurisdictional claims in published maps and institutional affiliations.123Assessing the impact of COVID-19 on persons with disabilities: development of a novel survey

Assessing the impact of COVID-19 on persons with disabilities: development of a novel survey

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Assessing the impact of COVID-19 on persons with disabilities: development of a novel survey

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