Literature DB >> 27736212

Conducting Accessible Research: Including People With Disabilities in Public Health, Epidemiological, and Outcomes Studies.

Dianne Rios1, Susan Magasi1, Catherine Novak1, Mark Harniss1.   

Abstract

People with disabilities are largely absent from mainstream health research. Exclusion of people with disabilities may be explicit, attributable to poorly justified exclusion criteria, or implicit, attributable to inaccessible study documents, interventions, or research measures. Meanwhile, people with disabilities experience poorer health, greater incidence of chronic conditions, and higher health care expenditure than people without disabilities. We outline our approach to "accessible research design"-research accessible to and inclusive of people with disabilities. We describe a model that includes 3 tiers: universal design, accommodations, and modifications. Through our work on several large-scale research studies, we provide pragmatic examples of accessible research design. Making efforts to include people with disabilities in public health, epidemiological, and outcomes studies will enhance the interpretability of findings for a significant patient population.

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Year:  2016        PMID: 27736212      PMCID: PMC5104996          DOI: 10.2105/AJPH.2016.303448

Source DB:  PubMed          Journal:  Am J Public Health        ISSN: 0090-0036            Impact factor:   9.308


  28 in total

1.  Health services use and health care expenditures for children with disabilities.

Authors:  Paul W Newacheck; Moira Inkelas; Sue E Kim
Journal:  Pediatrics       Date:  2004-07       Impact factor: 7.124

2.  Estimates of state-level health-care expenditures associated with disability.

Authors:  Wayne L Anderson; Brian S Armour; Eric A Finkelstein; Joshua M Wiener
Journal:  Public Health Rep       Date:  2010 Jan-Feb       Impact factor: 2.792

3.  The PROMIS initiative: involvement of rehabilitation stakeholders in development and examples of applications in rehabilitation research.

Authors:  Dagmar Amtmann; Karon F Cook; Kurt L Johnson; David Cella
Journal:  Arch Phys Med Rehabil       Date:  2011-10       Impact factor: 3.966

4.  Scientific reasons for including persons with disabilities in clinical and translational diabetes research.

Authors:  Shirley M Moore
Journal:  J Diabetes Sci Technol       Date:  2012-03-01

5.  Disparities in use of and unmet need for therapeutic and supportive services among school-age children with functional limitations: a comparison across settings.

Authors:  Ruth E Benedict
Journal:  Health Serv Res       Date:  2006-02       Impact factor: 3.402

6.  Persons with disabilities as an unrecognized health disparity population.

Authors:  Gloria L Krahn; Deborah Klein Walker; Rosaly Correa-De-Araujo
Journal:  Am J Public Health       Date:  2015-02-17       Impact factor: 9.308

Review 7.  Health inequity in children and youth with chronic health conditions.

Authors:  Jay G Berry; Sheila Bloom; Susan Foley; Judith S Palfrey
Journal:  Pediatrics       Date:  2010-12       Impact factor: 7.124

8.  The changing landscape of disability in childhood.

Authors:  Neal Halfon; Amy Houtrow; Kandyce Larson; Paul W Newacheck
Journal:  Future Child       Date:  2012

9.  Enabling our instruments: accommodation, universal design, and access to participation in research.

Authors:  A R Meyers; E M Andresen
Journal:  Arch Phys Med Rehabil       Date:  2000-12       Impact factor: 3.966

10.  Most hospitalized older persons do not meet the enrollment criteria for clinical trials in heart failure.

Authors:  Frederick A Masoudi; Edward P Havranek; Pam Wolfe; Cary P Gross; Saif S Rathore; John F Steiner; Diana L Ordin; Harlan M Krumholz
Journal:  Am Heart J       Date:  2003-08       Impact factor: 4.749

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  19 in total

1.  Engaging the disability community in informatics research: rationales and practical steps.

Authors:  Rupa S Valdez; Sophie E Lyon; Claire Wellbeloved-Stone; Mary Collins; Courtney C Rogers; Kristine D Cantin-Garside; Diogo Gonclaves Fortes; Chung Kim; Shaalini S Desai; Jessica Keim-Malpass; Raja Kushalnagar
Journal:  J Am Med Inform Assoc       Date:  2022-10-07       Impact factor: 7.942

Review 2.  Making Pain Research More Inclusive: Why and How.

Authors:  Mary R Janevic; Vani A Mathur; Staja Q Booker; Calia Morais; Samantha M Meints; Katherine A Yeager; Salimah H Meghani
Journal:  J Pain       Date:  2021-10-20       Impact factor: 5.383

3.  People with Disabilities and Other Forms of Vulnerability to the COVID-19 Pandemic: Study Protocol for a Scoping Review and Thematic Analysis.

Authors:  Tiago S Jesus; Sureshkumar Kamalakannan; Sutanuka Bhattacharjya; Yelena Bogdanova; Juan Carlos Arango-Lasprilla; Jacob Bentley; Barbara E Gibson; Christina Papadimitriou
Journal:  Arch Rehabil Res Clin Transl       Date:  2020-08-20

4.  In Different Voices: The Views of People with Disabilities about Return of Results from Precision Medicine Research.

Authors:  Maya Sabatello; Yuan Zhang; Ying Chen; Paul S Appelbaum
Journal:  Public Health Genomics       Date:  2020-04-15       Impact factor: 2.000

5.  Disability inclusion in precision medicine research: a first national survey.

Authors:  Maya Sabatello; Ying Chen; Yuan Zhang; Paul S Appelbaum
Journal:  Genet Med       Date:  2019-03-22       Impact factor: 8.822

6.  Exploring the Process of Cancer Care for Patients With Pre-Existing Mobility Disability.

Authors:  Nicole D Agaronnik; Areej El-Jawahri; Charlotta Lindvall; Lisa I Iezzoni
Journal:  JCO Oncol Pract       Date:  2020-12-22

7.  Exploring Cancer Treatment Experiences for Patients With Preexisting Mobility Disability.

Authors:  Nicole D Agaronnik; Areej El-Jawahri; Kristi Kirschner; Lisa I Iezzoni
Journal:  Am J Phys Med Rehabil       Date:  2021-02-01       Impact factor: 3.412

8.  Information, Advocacy and Signposting as a Low-Level Support for Adults with High-Functioning Autism Spectrum Disorder: An Example from the UK.

Authors:  Kris Southby; Olivia Robinson
Journal:  J Autism Dev Disord       Date:  2018-02

9.  Navigator Role for Promoting Adaptive Sports and Recreation Participation in Individuals With Disabilities.

Authors:  Moriah Iverson; Alexander V Ng; Alice F Yan; Kim Zvara; Michael Bonk; Deb Falk-Palec; Cherri Sylla; Maurine Strickland; Rachel Preston; Diane W Braza
Journal:  Am J Phys Med Rehabil       Date:  2021-06-01       Impact factor: 3.412

10.  Neurodiversity at work: a biopsychosocial model and the impact on working adults.

Authors:  Nancy Doyle
Journal:  Br Med Bull       Date:  2020-10-14       Impact factor: 4.291

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