Disability Statistics: Using National Surveys in the United States
Disability Surveillance using NationalHousehold Surveys in the UnitedStates: Where have we been andwhere are we going?Eric A. Lauer, MPH, PhD CandidateInstitute On DisabilityNew Hampshire, USA
Introduction• Focus– The difficulties of defining disability. The conceptthat disability is a state of being rather than adiagnosis.– There are unintended consequences ofmeasurement. We lose people in the nationalsurveillance model in the United States.
Overview• Challenges for evaluating data• Health & Disability Models• National Survey Methodology• Survey Administration• Introduction of the Six Question Sequence• Self-Reported Limitations• Disability Surveillance in the United States
Challenges• What is the relationship between health anddisability?– Distinct yet overlapping constructs– Function & Functional Limitations
Health & Disability ModelMolla, M.T., J. H. Madans, D. K. Wagener, and E. M. Crimmins. "Summary Measures ofPopulation Health: Report of Findings on Methodologic and Data Issues.". Healthy People2010 (2003).
International Classification ofFunctioning: Domains
Challenges, cont.• How do you evaluate the data collected?– Consider the historical context– Consider the implications of survey design,sampling design and underlying constructs– Estimating validity, reliability and error– Strengths, weaknesses and limitations of data
Challenges, continued• Most importantly, how do we moveforward???– Example, Cognitive Limitation & MEPS– Acknowledged model gaps– Discuss limitations in an open and transparentmanner
Model GapsThere are several concepts that are missed by models of disability:• Individuals can be perceived as having a disability, or consider themselves to havea disability, but not have this evaluation based on any measurable phenomenon• Disability can only be measured in the context of another domain or area. Somemodels do not take this into account and there is a loss of explanatory power.• The construct of disability is not stable, 5000 people in 5000 different lifecircumstances will have difference rates of disability.• That disability itself, as a distinct phenomenon, independent of any other factor(age or health), changes over time. It may not be constant. Duration of disabilityshould be measured.– There is acute and chronic disability, intermittent, and relatively stable/unstable• Systems that address/explain disability are often not practical enough and do notdirectly inform areas that could be targeted for the alleviation or prevention ofdisability (Ex. poorly defining the concept of the environment)
Self-Report• What does an individual consider a limitation?• What does an individual consider (un)healthy?• How does an individual interpret the actualquestion?• Systematic issues of interpretation, knownand unknown• Proxy Response
Six Questions• Is this person deaf or do they have serious difficultyhearing?• Is this person blind or do they have serious difficultyseeing even when wearing glasses?• Because of a physical, mental or emotional problem,do you have serious difficulty concentrating,remembering or making decisions?• Do you have difficulty walking of climbing stairs?• Do you have difficulty dressing or bathing?• Do you have difficulty doing errands alone such asshopping or visiting a doctor’s office?
Six Questions, continuedQuest Age Y/Y Y/N or N/YHearing 5+ 3.0% 3.0%Vision 5+ 1.2% 2.9%Mobility 5+ 5.4% 4.7%Cognitive 5+ 3.4% 3.9%Self-Care 5+ 1.4% 1.8%Independent 15+ 3.5% 3.5%Any 5+ 10.5% 8.3%
Estimation & Interpretation• Appropriate Hypotheses• Appropriate statistics– Rates versus ratios, multiplicative effects• Confidence Intervals & Standard Errors– Iterative repeated, samples, formulas• Bias– Underlying bias versus biased analysis• Limitations & Generalizability– State versus national data• Weighting• Imputation
What is theoverall state ofdisability research?Malhotra & Grover, 1998. Anassessment of survey research inPOM: from constructs toTheory. Journal of OperationsManagement 16, 407-425.
Where do we go from here?Pick up from here…Malhotra & Grover, 1998
ICF-AHRQ Recommended HealthOutcomesButler M, Kane RL, Larson S, Jeffery MM, Grove M. Quality Improvement Measurement of Outcomes for People With Disabilities. Closingthe Quality Gap: Revisiting the State of the Science. Evidence Report/Technology Assessment No. 208. (Prepared by theMinnesota Evidence-based Practice Center under Contract No. 290-2007-10064-I.) AHRQ Publication No. 12(13)-E013-EF. Rockville, MD:Agency for Healthcare Research and Quality; October 2012. www.effectivehealthcare.gov/reports/final.cfm.
What is it we are trying to measure?What matters most?• Should be based on the outcomes of goals of theresearch• Establish a relationship between the level offocus and outcomes of interest• Distinguish between the following factors:– Interventions directed at a disability from specificinterventions directed at a given medical problem fora person with a disability– Comprehensive programs designed to integratemedical and social services for people withdisabilities.
What is it we are trying to measure?What matters most?Butler M, Kane RL, Larson S, Jeffery MM, Grove M. Quality Improvement Measurement of Outcomes for People With Disabilities. Closingthe Quality Gap: Revisiting the State of the Science. Evidence Report/Technology Assessment No. 208. (Prepared by theMinnesota Evidence-based Practice Center under Contract No. 290-2007-10064-I.) AHRQ Publication No. 12(13)-E013-EF. Rockville, MD:Agency for Healthcare Research and Quality; October 2012. www.effectivehealthcare.gov/reports/final.cfm.
Thank you!• Contact InformationEric A. LauerEmail: firstname.lastname@example.orgPhone: 603-862-4320