- •The design of patient-reported outcome measures (PROMs) may pose a barrier to use by patients with cognitive impairments.
- •PROMs can be designed to reduce barriers for patients with cognitive impairments.
- •We discuss PROM design features: content, layout, and administration procedures.
- •The effect of PROM design on patients with cognitive impairments requires further study.
List of abbreviations:PRO (patient-reported outcome), PROM (patient-reported outcome measure)
Purchase one-time access:Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
One-time access price info
- For academic or personal research use, select 'Academic and Personal'
- For corporate R&D use, select 'Corporate R&D Professionals'
Subscribe:Subscribe to Archives of Physical Medicine and Rehabilitation
- The Affordable Care Act and the future of clinical medicine: the opportunities and challenges.Ann Intern Med. 2010; 153: 536-539
- Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims.Fed Regist. 2009; 74: 65132-65133
- The use of patient-reported outcomes (PRO) within comparative effectiveness research: implications for clinical practice and health care policy.Med Care. 2012; 50: 1060-1070
- Patient-reported outcomes in performance measurement.Research Triangle Institute Press, Research Triangle2015
- Patient reported outcomes (PROs) in performance measurement.National Quality Forum, Washington (DC)2013
- Conducting accessible research: including people with disabilities in public health, epidemiological, and outcomes studies.Am J Public Health. 2016; 106: 2137-2144
- Improving measurement methods in rehabilitation: core concepts and recommendations for scale development.Arch Phys Med Rehabil. 2012; 93: S154-S163
- Quality improvement measurement of outcomes for people with disabilities. Closing the quality gap: revisiting the state of the science: evidence report/technology assessment executive summary no. 208.Agency for Healthcare Research and Quality, Rockville2012 (AHRQ Pub. No. 12(13)-E013-1)
- Criteria for assessing the tools of disability outcomes research.Arch Phys Med Rehabil. 2000; 81: S15-S20
- Guidelines for assessment of and intervention with persons with disabilities.Am Psychol. 2012; 67: 43-62
- Standards for educational and psychological testing.American Educational Research Association, Washington (DC)1999
- Enabling our instruments: accommodation, universal design, and access to participation in research.Arch Phys Med Rehabil. 2000; 81: S5-S9
- Considerations for developing interfaces for collecting patient-reported outcomes that allow the inclusion of individuals with disabilities.Med Care. 2007; 45: S48-S54
- Profiles of cognitive functioning in chronic spinal cord injury and the role of moderating variables.J Int Neuropsychol Soc. 1997; 3: 464-472
- Vascular contributions to cognitive impairment and dementia: a statement for healthcare professionals from the American Heart Association/American Stroke Association.Stroke. 2011; 42: 2672-2713
- Diabetes as a risk factor for dementia and mild cognitive impairment: a meta-analysis of longitudinal studies.Intern Med J. 2012; 42: 484-491
- International classification of functioning, disability and health: ICF.World Health Organization, Geneva2001
- Universal Design for Computer-Based Testing (UD-CBT) guidelines.Pearson, Boulder, CO2010
- Accessibility theory for enhancing the validity of test results for students with special needs.Intl J Disabil Dev Educ. 2012; 59: 97-111
Beddow PA, Elliott SN, Kettler RJ. Test accessibility: item reviews and lessons learned from four state assessments. Education Research International 2013;952704. Available at: https://www.hindawi.com/journals/edri/2013/952704/. Accessed May 30, 2017
- TAMI accessibility rating matrix: technical manual.Vanderbilt University, Nashville2010
- Cognitive sciences and survey methods.in: Jabine T.B. Straf M.L. Tanur J.M. Tourangeau R. Cognitive aspects of survey methodology: Building a bridge between disciplines. National Academy Press, Washington, DC1984: 73-100
- Self-reported health of people with intellectual disability.Intellect Dev Disabil. 2012; 50: 352-369
- Accessibility, usability and universal design—positioning and definition of concepts describing person-environment relationships.Disabil Rehabil. 2003; 25: 57-66
- Enhancing the accessibility of high school science tests: a multistate experiment.Except Child. 2012; 79: 91-106
- Invisible access needs of people with intellectual disabilities: a conceptual model of practice.Intellect Dev Disabil. 2009; 47: 395-400
- Modified multiple-choice items for alternate assessments: reliability, difficulty, and differential boost.Applied Measurement in Education. 2011; 24: 210-234
- A review of the reliability and validity of Likert-type scales for people with intellectual disability.J Intellect Disabil Res. 2006; 50: 813-827
- Reliability of a method for establishing the capacity of individuals with an intellectual disability to respond to Likert scales.J Intellect Dev Disabil. 2013; 38: 318-324
- Nielsen-Bohlman L. Panzer A.M. Kindig D.A. Committee on Health Literacy Health literacy: a prescription to end confusion. National Academies Press, Washington (DC)2004
- The universally designed classroom: accessible curriculum and digital technologies.Harvard University Press, Cambridge2005
- Accessible reading assessments for students with disabilities: the role of cognitive, grammatical, lexical, and textual/visual features.National Center for Research on Evaluation, Standards, and Student Testing (CRESST), Los Angeles, CA2011 (CRESST Report 785)
- NIH Toolbox: reasonable accommodation guidelines.National Institutes of Health, Bethesda, MA2012
- Efficiency in learning: evidence-based guidelines to manage cognitive load.John Wiley & Sons, San Francisco2011
- Methodological issues in interviewing and using self-report questionnaires with people with mental retardation.Psychol Assess. 2001; 13: 319
- A review of the use of self-report assessment with young children.Br J Occup Ther. 2002; 65: 108-116
- Item selection in self-report measures for children and adolescents with disabilities: lessons from cognitive interviews.J Pediatr Nurs. 2011; 26: 559-565
- The social construction of intellectual disability.Cambridge University Press, Cambridge2004
- Acquiescence in interviews with people who have mental retardation.Ment Retard. 2002; 40: 14-29
- Concepts of access for people with learning difficulties: towards a shared understanding.Disabil Soc. 2009; 24: 273-287
- Self-reports: how the questions shape the answers.Am Psychol. 1999; 54: 93-105
- Integrating response shift into health-related quality of life research: a theoretical model.Soc Sci Med. 1999; 48: 1507-1515
- Applications of response shift theory and methods to participation measurement: a brief history of a young field.Arch Phys Med Rehabil. 2010; 91: S38-S43
- Relationships between daily acute glucose fluctuations and cognitive performance among aged type 2 diabetic patients.Diabetes Care. 2010; 33: 2169-2174
- Nonmotor fluctuations in Parkinson's disease: frequent and disabling.Neurology. 2002; 59: 408-413
- AHRQ health literacy universal precautions toolkit, second edition. (Prepared by Colorado Health Outcomes Program, University of Colorado Anschutz Medical Campus under Contract No. HHSA290200710008, TO#10).Agency for Healthcare Research and Quality, Rockville2015 (AHRQ Publication No. 15-0023-EF)
- Am I making myself clear?: Mencap's guidelines for accessible writing.Mencap, London2000
- Self-determination and individuals with severe disabilities: re-examining meanings and misinterpretations.Res Pract Persons Severe Disabl. 2005; 30: 113-120
- 'Learning difficulties', the social model of disability and impairment: challenging epistemologies.Disabil Soc. 2001; 16: 207-231
- Noll S. Trent J.W. Mental retardation in America: a historical reader. New York University Press, New York2004
- Infusing disability studies into the rehabilitation sciences.Top Stroke Rehabil. 2008; 15: 283-287
- Why I burned my book and other essays on disability.Temple University Press, Philadelphia2003
- Simply put: a guide for creating easy-to-understand materials.Centers for Disease Control and Prevention, Atlanta2009
- Web accessibility design recommendations for people with cognitive disabilities.Technol Disabil. 2007; 19: 205
- Subjective quality of life in children with intellectual impairment–how can it be assessed?.Dev Med Child Neurol. 2005; 47: 281-285
Diagram Center. General guidelines. Available at: http://diagramcenter.org/general-guidelines-final-draft.html. Retrieved August 1, 2014.
The Inclusive Learning Design Handbook. Accessible standardized testing: functional considerations. Available at: http://handbook.floeproject.org/FunctionalConsiderations.html. Retrieved August 1, 2014.
Rudd RE. Guidelines for creating materials: resources for developing and assessing materials. Harvard University. Available at: https://cdn1.sph.harvard.edu/wp-content/uploads/sites/135/2012/09/resources_for_creating_materials.pdf. Accessed May 2014.
- Testing accommodations: theory and research to inform practice.Int J Disabil Dev Educ. 2012; 59: 53-66
- Striving for shared understandings: therapists' perspectives of the benefits and dilemmas of using a child self-assessment.OTJR (Thorofare N J). 2012; 32: S48-S58
- Rapport: a key to treatment success.Complement Ther Clin Pract. 2005; 11: 262-265
- How does communication heal? Pathways linking clinician–patient communication to health outcomes.Patient Educ Couns. 2009; 74: 295-301
- Validity, reliability, and usability of the Pediatric Evaluation of Disability Inventory-Computer Adaptive Test for autism spectrum disorders.Dev Med Child Neurol. 2016; 58: 255-261
- Evaluation of item candidates: the PROMIS qualitative item review.Med Care. 2007; 45: S12
- Pretesting survey instruments: an overview of cognitive methods.Qual Life Res. 2003; 12: 229-238
- Refining the Pediatric Evaluation of Disability Inventory–Patient-Reported Outcome (PEDI-PRO) item candidates: interpretation of a self-reported outcome measure of functional performance by young people with neurodevelopmental disabilities.Dev Med Child Neurol. 2017 Jun 5; ([E-pub ahead of print])
- Contemporary measurement techniques for rehabilitation outcomes assessment.J Rehabil Med. 2005; 37: 339-345
- The effects of changes in the order of verbal labels and numerical values on children's scores on attitude and rating scales.Br Educ Res J. 2012; 38: 319-331
- Designing scalar questions for web surveys.Sociological Methods & Research. 2009; 37: 393-425
Supported by the Comprehensive Opportunities in Rehabilitation Research Training, National Center Medical Rehabilitation Research, National Institute of Child Health and Human Development/National Institute Neurological Disorders and Stroke, National Institutes of Health (grant no. K12 HD055931).