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Quality of Life Research

, Volume 26, Issue 10, pp 2633–2645 | Cite as

Relationships between environmental factors and participation in adults with traumatic brain injury, stroke, and spinal cord injury: a cross-sectional multi-center study

  • Alex W. K. WongEmail author
  • Sheryl Ng
  • Jessica Dashner
  • M. Carolyn Baum
  • Joy Hammel
  • Susan Magasi
  • Jin-Shei Lai
  • Noelle E. Carlozzi
  • David S. Tulsky
  • Ana Miskovic
  • Arielle Goldsmith
  • Allen W. Heinemann
Article

Abstract

Purpose

To develop and evaluate a model of environmental factors-participation relationships for persons with traumatic brain injury (TBI), stroke, and spinal cord injury (SCI), and test whether this model differed across three diagnostic groups, as well as other demographic and clinical characteristics.

Methods

A cross-sectional observational study included 545 community-dwelling adults with neurological disorders (TBI = 166; stroke = 189; SCI = 190) recruited at three academic medical centers. Participants completed patient-reported measures of environmental factors and participation.

Results

The final structural equation model had acceptable fit to the data (CFI = 0.923; TLI = 0.898; RMSEA = 0.085; SRMR = 0.053), explaining 63% of the variance in participation in social roles and activities. Systems, services, and policies had an indirect influence on participation and this relation was mediated by social attitudes and the built and natural environment. Access to information and technology was associated with the built and natural environment which in turn influence on participation (ps < 0.001). The model was consistent across sex, diagnosis, severity/type of injury, education, race, age, marital status, years since injury, wheelchairs use, insurance coverage, personal or household income, and crystallized cognition.

Conclusions

Social and physical environments appear to mediate the influence of systems, services, and policies on participation after acquired neurological disorders. These relations are stable across three diagnostic groups and many personal and clinical factors. Our findings inform health and disability policy, and provide guidance for implementing the initiatives in Healthy People 2020 in particular for people with acquired neurological disorders.

Keywords

Environment Participation Stroke Spinal cord injury Traumatic brain injury 

Abbreviations

ADA

Americans with Disabilities Act

AIT

Access to information and technology

BNE

Built and natural environment

CFA

Confirmatory factor analysis

CFI

Comparative Fit Index

CPI

Community Participation Indicators

EFIB

Environmental Factors Item Banks

GCS

Glasgow Coma Scale

ICF

International Classification of Functioning, Disability and Health

PROM

Patient-Reported Outcomes Measures

PROMIS

Patient-Reported Outcomes Measurement Information System

QOL

Quality of life

RMSEA

Root mean square error of approximation

SCI

Spinal cord injury

SEM

Structural equation modeling

SRA

Social roles and activities

SRMR

Standardized Root Mean Square Residual

SSP

Systems, Services and Policies

TBI

Traumatic brain injury

TLI

Tucker-Lewis index

WHO

World Health Organization

Notes

Acknowledgements

The contents do not necessarily represent the policy of the Department of Health and Human Services or the Craig H. Neilsen Foundation. We certify that all financial and material support for this research and work are clearly identified in the title page of the manuscript. The first and last authors had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. We acknowledge Patrick Semik, BS at the Rehabilitation Institute of Chicago for data management and analysis. Additionally, we would like to acknowledge Megen Devine, MA, and Ojoyi Agbo, BS at Washington University School of Medicine for their editorial assistance.

Funding

This study was supported by the National Institute on Disability, Independent Living, and Rehabilitation Research, the Administration on Community Living, the U.S. Department of Health and Human Services to the Rehabilitation Institute of Chicago (Grant No. H133B090024) and to Washington University in St. Louis (Grant No. H133F140037), and by the Craig H. Neilsen Foundation to Washington University in St. Louis (Grant No. 290474).

Compliance with ethical standards

Conflict of Interest

All authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Supplementary material

11136_2017_1586_MOESM1_ESM.docx (31 kb)
Supplementary material 1 (DOCX 31 kb)

References

  1. 1.
    Courtney-Long, E. A., Carroll, D. D., Zhang, Q. C., Stevens, A. C., Griffin-Blake, S., Armour, B. S., et al. (2015). Prevalence of disability and disability type among adults—United States, 2013. Morbidity and Mortality Weekly Report (MMWR), 64(29), 777–783.CrossRefGoogle Scholar
  2. 2.
    World Health Organization (2006). Neurological disorders: public health challenges. http://www.who.int/mental_health/neurology/neurological_disorders_report_web.pdf. Accessed April 8 2017.
  3. 3.
    Centers for Disease Control and Prevention (2017). National Center for Health Statistics. https://www.cdc.gov/nchs/fastats/stroke.htm. Accessed April 8 2017.
  4. 4.
    Taylor, C. A., Bell, J. M., Breidling, M. J., & Xu, L. (2017). Traumatic Brain Injury-Related Emergency Department Visits, Hospitalizations, and Deaths—United States, 2007 and 2013. MMWR Surveillance Summaries, 66, 1–16.CrossRefGoogle Scholar
  5. 5.
    National Spinal Cord Injury Statistical Center (2016). Facts and figures at a glance. https://www.nscisc.uab.edu/Public/Facts%202016.pdf. Accessed April 8 2017.
  6. 6.
    Office of Disease Prevention and Health Promotion (2014). Healthy People 2020. https://www.healthypeople.gov/2020/topics-objectives/topic/disability-and-health. Accessed December 30 2015.
  7. 7.
    National Council on Disability (2015). As the U.S. Celebrates 25th Anniversary of the Americans with Disabilities Act, National Council on Disability Issues Annual Progress Report. https://www.ncd.gov/newsroom/us-celebrates-25th-anniversary-americans-disabilities-act-national-council-disability. Accessed January 18 2015.
  8. 8.
    Gostin, L. O. (2015). The Americans with Disabilities Act at 25: The highest expression of American values. JAMA, 313(22), 2231–2235.CrossRefPubMedGoogle Scholar
  9. 9.
    World Health Organization. (2001). International Classification of Functioning, Disability and Health-ICF. Geneva: World Health Organization.Google Scholar
  10. 10.
    Hammel, J., Magasi, S., Heinemann, A., Whiteneck, G., Bogner, J., & Rodriguez, E. (2008). What does participation mean? An insider perspective from people with disabilities. Disability and Rehabilitation, 30(19), 1445–1460.CrossRefPubMedGoogle Scholar
  11. 11.
    Field, M. J., & Jette, A. (2007). The future of disability in America. Washington, DC: National Academies Press.Google Scholar
  12. 12.
    Hammel, J., Magasi, S., Heinemann, A., Gray, D. B., Stark, S., Kisala, P., et al. (2015). Environmental barriers and supports to everyday participation: a qualitative insider perspective from people with disabilities. Archives of Physical Medicine and Rehabilitation, 96(4), 578–588.CrossRefPubMedGoogle Scholar
  13. 13.
    Magasi, S., Wong, A., Gray, D. B., Hammel, J., Baum, C., Wang, C.-C., et al. (2015). Theoretical foundations for the measurement of environmental factors and their impact on participation among people with disabilities. Archives of Physical Medicine and Rehabilitation, 96(4), 569–577.CrossRefPubMedGoogle Scholar
  14. 14.
    Heinemann, A. W., Magasi, S., Hammel, J., Carlozzi, N. E., Garcia, S. F., Hahn, E. A., et al. (2015). Environmental factors item development for persons with stroke, traumatic brain injury and spinal cord injury. Archives of Physical Medicine and Rehabilitation, 96(4), 589–595.CrossRefPubMedGoogle Scholar
  15. 15.
    Stiens, S. A., Kirshblum, S. C., Groah, S. L., McKinley, W. O., & Gittler, M. S. (2002). 4. Optimal participation in life after spinal cord injury: Physical, psychosocial, and economic reintegration into the environment. Archives of Physical Medicine and Rehabilitation, 83, S72–S81.CrossRefPubMedGoogle Scholar
  16. 16.
    Hammel, J., Jones, R., Gossett, A., & Morgan, E. (2006). Examining barriers and supports to community living and participation after a stroke from a participatory action research approach. Topics in Stroke Rehabilitation, 13(3), 43–58.CrossRefPubMedGoogle Scholar
  17. 17.
    Whiteneck, G. G., Gerhart, K. A., & Cusick, C. P. (2004). Identifying environmental factors that influence the outcomes of people with traumatic brain injury. The Journal of head trauma rehabilitation, 19(3), 191–204.CrossRefPubMedGoogle Scholar
  18. 18.
    Bronfenbrenner, U. (1999). Environments in developmental perspective: Theoretical and operational models. In S. L. Friedman & T. D. Wachs (Eds.), Measuring environment across the life span: Emerging methods and concepts (pp. 3–28). Washington, DC: American Psychology Association Press.CrossRefGoogle Scholar
  19. 19.
    Schulz, A., & Northridge, M. E. (2004). Social determinants of health: implications for environmental health promotion. Health Education & Behavior, 31(4), 455–471.CrossRefGoogle Scholar
  20. 20.
    Lai, J.-S., Hammel, J., Jerousek, S., Goldsmith, A., Miskovic, A., Baum, C., et al. (2016). An Item Bank to Measure Systems, Services, and Policies: Environmental Factors Affecting People with Disabilities. Archives of Physical Medicine and Rehabilitation, 97, 2102–2112.CrossRefPubMedGoogle Scholar
  21. 21.
    Bricout, J. C., & Gray, D. B. (2006). Community receptivity: The ecology of disabled persons’ participation in the physical, political and social environments. Scandinavian Journal of Disability Research, 8(1), 1–21.CrossRefGoogle Scholar
  22. 22.
    Hollingsworth, H., & Gray, D. B. (2010). Structural equation modeling of the relationships between participation in leisure activities and community environments by people with mobility impairments. Archives of Physical Medicine and Rehabilitation, 91(8), 1174–1181.CrossRefPubMedGoogle Scholar
  23. 23.
    Heinemann, A. W., Miskovic, A., Semik, P., Wong, A., Dashner, J., Baum, C., et al. (2016). Measuring environmental factors: Unique and overlapping International Classification Functioning, Disability and Health coverage of 5 instruments. Archives of Physical Medicine and Rehabilitation, 97(12), 2113–2122.CrossRefPubMedGoogle Scholar
  24. 24.
    Williams, D. H., Levin, H. S., & Eisenberg, H. M. (1990). Mild head injury classification. Neurosurgery, 27(3), 422–428.CrossRefPubMedGoogle Scholar
  25. 25.
    Traumatic Brain Injury Model Systems National Data Center (2006). Traumatic Brain Injury Model Systems National Data Base Inclusion Criteria.Google Scholar
  26. 26.
    Kirshblum, S. C., Burns, S. P., Biering-Sorensen, F., Donovan, W., Graves, D. E., Jha, A., et al. (2011). International standards for neurological classification of spinal cord injury (revised 2011). The Journal of Spinal Cord Medicine, 34(6), 535–546.CrossRefPubMedPubMedCentralGoogle Scholar
  27. 27.
    Van Swieten, J., Koudstaal, P., Visser, M., Schouten, H., & Van Gijn, J. (1988). Interobserver agreement for the assessment of handicap in stroke patients. Stroke, 19(5), 604–607.CrossRefPubMedGoogle Scholar
  28. 28.
    Bailey, I. L., & Lovie, J. E. (1976). New design principles for visual acuity letter charts. American journal of optometry and physiological optics, 53(11), 740–745.CrossRefPubMedGoogle Scholar
  29. 29.
    Wilkinson, G. S., & Robertson, G. (2006). Wide Range Achievement Test (WRAT4). Lutz, FL: Psychological Assessment Resources.Google Scholar
  30. 30.
    Enderby, P. M., Wood, V. A., Wade, D. T., & Hewer, R. L. (1986). The Frenchay Aphasia Screening Test: a short, simple test for aphasia appropriate for non-specialists. Disability and Rehabilitation, 8(4), 166–170.Google Scholar
  31. 31.
    Hahn, E. A., DeVellis, R. F., Bode, R. K., Garcia, S. F., Castel, L. D., Eisen, S. V., et al. (2010). Measuring social health in the patient-reported outcomes measurement information system (PROMIS): item bank development and testing. Quality of Life Research, 19(7), 1035–1044.CrossRefPubMedPubMedCentralGoogle Scholar
  32. 32.
    Heinemann, A. W., Magasi, S., Bode, R. K., Hammel, J., Whiteneck, G. G., Bogner, J., et al. (2013). Measuring enfranchisement: Importance of and control over participation by people with disabilities. Archives of Physical Medicine and Rehabilitation, 94(11), 2157–2165.CrossRefPubMedGoogle Scholar
  33. 33.
    Hobart, J. C., Cano, S. J., Zajicek, J. P., & Thompson, A. J. (2007). Rating scales as outcome measures for clinical trials in neurology: problems, solutions, and recommendations. The Lancet Neurology, 6(12), 1094–1105.CrossRefPubMedGoogle Scholar
  34. 34.
    Whiteneck, G. G., Harrison-Felix, C. L., Mellick, D. C., Brooks, C., Charlifue, S. B., & Gerhart, K. A. (2004). Quantifying environmental factors: a measure of physical, attitudinal, service, productivity, and policy barriers. Archives of Physical Medicine and Rehabilitation, 85(8), 1324–1335.CrossRefPubMedGoogle Scholar
  35. 35.
    Keysor, J., Jette, A., & Haley, S. (2005). Development of the home and community environment (HACE) instrument. Journal of Rehabilitation Medicine, 37(1), 37–44.CrossRefPubMedGoogle Scholar
  36. 36.
    Heinemann, A. W., Lai, J.-S., Wong, A., Dashner, J., Magasi, S., Hahn, E. A., et al. (2016). Using the ICF’s environmental factors framework to develop an item bank measuring built and natural environmental features affecting persons with disabilities. Quality of Life Research. doi: 10.1007/s11136-016-1314-6.PubMedGoogle Scholar
  37. 37.
    Garcia, S. F., Hahn, E. A., Magasi, S., Lai, J.-S., Semik, P., Hammel, J., et al. (2014). Development of self-report measures of social attitudes that act as environmental barriers and facilitators for people with disabilities. Archives of Physical Medicine and Rehabilitation, 96(4), 596–603.CrossRefPubMedPubMedCentralGoogle Scholar
  38. 38.
    Weintraub, S., Dikmen, S. S., Heaton, R. K., Tulsky, D. S., Zelazo, P. D., Bauer, P. J., et al. (2013). Cognition assessment using the NIH Toolbox. Neurology, 80(11 Supplement 3), S54–S64.CrossRefPubMedPubMedCentralGoogle Scholar
  39. 39.
    Casaletto, K. B., Umlauf, A., Beaumont, J., Gershon, R., Slotkin, J., Akshoomoff, N., et al. (2015). Demographically corrected normative standards for the English version of the NIH Toolbox Cognition Battery. Journal of the International Neuropsychological Society, 21(05), 378–391.CrossRefPubMedPubMedCentralGoogle Scholar
  40. 40.
    Kline, R. B. (2005). Principles and practice of structural equation modeling. New York: Guilford Press.Google Scholar
  41. 41.
    Wang, J., & Wang, X. (2012). Structural equation modeling: Applications using Mplus. West Sussex: Wiley.CrossRefGoogle Scholar
  42. 42.
    Browne, M. W., & Cudeck, R. (1993). Alternative ways of assessing model fit. In K. A. Bollen & J. A. Long (Eds.), Testing Structural Equation Models (pp. 136–162). Thousand Oaks: Sage Publications.Google Scholar
  43. 43.
    Hu, L., & Bentler, P. M. (1999). Cutoff criteria for fit indexes in covariance structure analysis: Conventional criteria versus new alternatives. Structural Equation Modeling, 6(1), 1–55. doi: 10.1080/10705519909540118.CrossRefGoogle Scholar
  44. 44.
    Weston, R., Gore, P. A., Jr., Chan, F., & Catalano, D. (2008). An introduction to using structural equation models in rehabilitation psychology. Rehabilitation Psychology, 53(3), 340–356.CrossRefGoogle Scholar
  45. 45.
    Anderson, J. C., & Gerbing, D. W. (1988). Structural equation modeling in practice: A review and recommended two-step approach. Psychological Bulletin, 103(3), 411–423.CrossRefGoogle Scholar
  46. 46.
    Hahn, E. A., Garcia, S. F., Lai, J.-S., Miskovic, A., Jerousek, S., Semik, P., et al. (2016). Measuring Access to Information and Technology: Environmental Factors Affecting Persons With Neurologic Disorders. Archives of Physical Medicine and Rehabilitation, 97(8), 1284–1294.CrossRefPubMedGoogle Scholar
  47. 47.
    Iezzoni, L. I., & Freedman, V. A. (2008). Turning the disability tide: the importance of definitions. JAMA, 299(3), 332–334.CrossRefPubMedGoogle Scholar
  48. 48.
    Berkman, L. F., & Glass, T. (2000). Social integration, social networks, social support, and health. In L. F. Berkman & I. Kawachi (Eds.), Social epidemiology (Vol. 1, pp. 137–173). New York: Oxford University Press.Google Scholar
  49. 49.
    Gray, J. A., Zimmerman, J. L., & Rimmer, J. H. (2012). Built environment instruments for walkability, bikeability, and recreation: Disability and universal design relevant? Disability and Health Journal, 5(2), 87–101.CrossRefPubMedGoogle Scholar
  50. 50.
    Lawson, A. (2006). United Nations Convention on the Rights of Persons with Disabilities: New Era or False Dawn? Syracuse Journal of International Law and Commerce, 34, 563–619.Google Scholar
  51. 51.
    World Health Organization. (2014). WHO global disability action plan 2014–2021: better health for all people with disability. Geneva: World Health Organization.Google Scholar

Copyright information

© Springer International Publishing Switzerland 2017

Authors and Affiliations

  • Alex W. K. Wong
    • 1
    • 2
    Email author
  • Sheryl Ng
    • 2
    • 3
  • Jessica Dashner
    • 1
  • M. Carolyn Baum
    • 4
  • Joy Hammel
    • 5
  • Susan Magasi
    • 6
  • Jin-Shei Lai
    • 7
  • Noelle E. Carlozzi
    • 8
  • David S. Tulsky
    • 9
  • Ana Miskovic
    • 10
  • Arielle Goldsmith
    • 10
  • Allen W. Heinemann
    • 10
    • 11
  1. 1.Program in Occupational Therapy and Department of NeurologyWashington University School of MedicineSt. LouisUSA
  2. 2.Program in Occupational TherapyWashington University School of MedicineSt. LouisUSA
  3. 3.Saw Swee Hock School of Public HealthNational University of SingaporeSingaporeSingapore
  4. 4.Program in Occupational Therapy, Department of Neurology and George Warren Brown School of Social WorkWashington UniversitySt. LouisUSA
  5. 5.Departments of Occupational Therapy and Disability and Human DevelopmentUniversity of Illinois at ChicagoChicagoUSA
  6. 6.Department of Occupational TherapyUniversity of Illinois at ChicagoChicagoUSA
  7. 7.Departments of Medical Social Science and PediatricNorthwestern University Feinberg School of MedicineChicagoUSA
  8. 8.Department of Physical Medicine and RehabilitationUniversity of Michigan Medical SchoolAnn ArborUSA
  9. 9.Department of Physical TherapyUniversity of DelawareNewarkUSA
  10. 10.Center for Rehabilitation Outcomes ResearchRehabilitation Institute of ChicagoChicagoUSA
  11. 11.Department of Physical Medicine and RehabilitationNorthwestern University Feinberg School of MedicineChicagoUSA

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