Measurement of social participation outcomes in rehabilitation of veterans with traumatic brain injury

Journal of Rehabilitation Research and Development

Volumn 49, Issue 1, 2012, Pages 139-154

  Stiers, William ^a   Carlozzi, Noelle ^b,c   Cernich, Alison ^d,e   Velozo, Craig ^d,f   Pape, Theresa ^g,h   Hart, Tessa ^i,j   Gulliver, Suzy ^d,k   Rogers, Margaret ^l   Villarrea, Edgar ^m   Gordon, Shalanda ^n,o   Gordon, Wayne ^p   Whiteneck, Gale ^q  

^a JOHNS HOPKINS UNIVERSITY SCHOOL OF MEDICINE   (United States)

^b KESSLER FOUNDATION   (United States)

^c RUTGERS NEW JERSEY MEDICAL SCHOOL   (United States)

^d VETERANS AFFAIRS MEDICAL CENTER   (United States)

^e UNIVERSITY OF MARYLAND SCHOOL OF MEDICINE   (United States)

^f UNIVERSITY OF FLORIDA   (United States)

^g HINES VA HOSPITAL   (United States)

^h NORTHWESTERN UNIVERSITY   (United States)

ⁱ MOSS REHABILITATION RESEARCH INSTITUTE   (United States)

^j EINSTEIN MEDICAL CENTER   (United States)

^k TEXAS A M COLLEGE OF MEDICINE   (United States)

^l AMERICAN SPEECH LANGUAGE HEARING ASSOCIATION   (United States)

^m VA Eastern Colorado Health Care System   (United States)

ⁿ Central Texas Veterans Health Care System   (United States)

^o St Phillip's College   (United States)

^p Department of Rehabilitation Medicine   (United States)

^q CRAIG HOSPITAL   (United States)

more..

Author keywords

Clinical practice; Measurement; Outcomes; Partici pation; Rehabilitation; Research; Social participation; Traumatic brain injury; VA; Veterans

Indexed keywords

CLINICAL PRACTICES; OUTCOMES; PARTICI-PATION; SOCIAL PARTICIPATION; TRAUMATIC BRAIN INJURIES; VA; VETERANS;

BRAIN; HEALTH CARE; PATIENT REHABILITATION; RESEARCH;

MEASUREMENTS;

ARTICLE; CLINICAL PRACTICE; COMMUNITY BASED REHABILITATION; HEALTH CARE SYSTEM; HUMAN; MEASUREMENT; OUTCOME ASSESSMENT; PRIORITY JOURNAL; QUALITY OF LIFE; REHABILITATION CARE; RESEARCH; RESOURCE ALLOCATION; SOCIAL PARTICIPATION; TRAUMATIC BRAIN INJURY; VETERAN; VOCATIONAL REHABILITATION;

ACTIVITIES OF DAILY LIVING; BRAIN INJURIES; HUMANS; OUTCOME ASSESSMENT (HEALTH CARE); PSYCHOMETRICS; QUALITY OF LIFE; QUESTIONNAIRES; RESEARCH; SOCIAL ADJUSTMENT; SOCIAL PARTICIPATION; UNITED STATES; UNITED STATES DEPARTMENT OF VETERANS AFFAIRS; VETERANS;

EID: 84857723136     PISSN: 07487711     EISSN: 19381352     Source Type: Journal    
DOI: 10.1682/JRRD.2010.07.0131     Document Type: Article

References (76)

1. National Center for Injury Prevention and Control. Trau-matic brain injury [Internet]. Atlanta (GA): Centers for Disease Control and Prevention; 2011 [updated 2011 Oct 6; cited 2010 Mar 11]. Available from: http://www.cdc.gov/ncipc/tbi/TBI.htm
2. Institute of Medicine. Gulf war and health. Volume 7: Long-term consequences of traumatic brain injury. Washington (DC): The National Academies Press; 2009.
3. Vasterling JJ, Verfaellie M, Sullivan KD. Mild traumatic brain injury and posttraumatic stress disorder in returning veterans: Perspectives from cognitive neuroscience. Clin Psychol Rev. 2009;29(8):674-84. http://dx.doi.org/10.1016/j.cpr.2009.08.004
4. Faul M, Xu L, Wald MM, Coronado VG. Traumatic brain injury in the United States: Emergency department visits, hospitalizations and deaths 2002-2006 [Internet]. Atlanta (GA): Centers for Disease Control and Prevention; 2010 [updated 2010 Sep 23; cited 2010 May 31]. Available from: http://www.cdc.gov/traumaticbraininjury/tbi_ed.html
5. DoD worldwide numbers for traumatic brain injury [Inter-net]. Washington (DC): Department of Defense; 2009 [updated 2011 May 16; cited 2010 Mar 11]. Available from: http://health.mil/Research/TBI_Numbers.aspx
6. Jaffee M, French L, Cifu D. TBI in the military and veter-ans: From field to community. Proceedings of the 8th World Congress on Brain Injury; 2010 Mar 10-14; Wash-ington, DC.
7. Golding H, Bass E, Percy A, Goldberg M. Understanding recent estimates of PTSD and TBI from Operations Iraqi Freedom and Enduring Freedom. J Rehabil Res Dev. 2009; 46(5):vii-xiv. http://dx.doi.org/10.1682/JRRD.2009.06.0081
8. Tanielian TL, Jaycox L. Invisible wounds of war: Psycho-logical and cognitive injuries, their consequences, and ser-vices to assist recovery. Santa Monica (CA): RAND; 2008.
9. DoD worldwide numbers for traumatic brain injury [Internet]. Washington (DC): Defense and Veterans Brain Injury Center; 2009 [updated 2011 May 16; cited 2010 Mar 17]. Available from: http://www.dvbic.org/TBI-Numbers.aspx
10. Gouvier WD, Uddo-Crane M, Brown LM. Base rates of post-concussional symptoms. Arch Clin Neuropsychol. 1988; 3(3):273-78
11. Iverson G, Lange R. Examination of "postconcussion-like" symptoms in a healthy sample. Appl Neuropsychol. 2003; 10(3):137-44 http://dx.doi.org/10.1207/S15324826AN1003_02
12. Machulda MM, Bergquist TF, Ito V, Chew, S. Relationship between stress, coping, and postconcussion symptoms in a healthy adult population. Arch Clin Neuropsychol. 1998; 13(5):415-24.
13. Sawchyn JM, Brulot MM, Strauss E. Note on the use of the Postconcussion Syndrome Checklist. Arch Clin Neuropsy-chol. 2000;15(1):1-8.
14. Suhr JA, Gunstad J. Postconcussive symptom report: The relative influence of head injury and depression. J Clin Exp Neuropsychol. 2002;24(8):981-93. http://dx.doi.org/10.1076/jcen.24.8.981.8372
15. Iverson GL. Misdiagnosis of the persistent postconcussion syndrome in patients with depression. Arch Clin Neuropsy-chol. 2006;21(4):303-10. http://dx.doi.org/10.1016/j.acn.2005.12.008
16. Fox DD, Lees-Haley PR, Earnest K, Dolezal-Wood S. Post-concussive symptoms: Base rates and etiology in psychiatric patients. Clin Neuropsychologist. 1995;9(1):89-92. http://dx.doi.org/10.1080/13854049508402064
17. Iverson G, McCracken L. "Postconcussive" symptoms in persons with chronic pain. Brain Inj. 1997;11(11):783-90. http://dx.doi.org/10.1080/026990597122990
18. Gasquoine P. Postconcussional symptoms in chronic back pain. Appl Neuropsychol. 2000;7(2):83-89. http://dx.doi.org/10.1207/S15324826AN0702_3
19. Schretlen DJ, Testa SM, Winickl JM, Pearlson GD, Gordon B. Frequency and bases of abnormal performance by healthy adults on neuropsychological testing. J Int Neuro-psychol Soc. 2008;14(3):436-45. http://dx.doi.org/10.1017/S1355617708080387
20. International Classification of Functioning, Disability and Health. Geneva (Switzerland): World Health Organization; 2001.
21. International Classification of Impairments, Disabilities and Handicaps: A manual of classification relating to the consequences of disease. Geneva (Switzerland): World Health Organization; 1980.
22. Pope AM, Tarlov AR. Disability in America: Toward a national agenda for prevention. Washington (DC): National Academy Press; 1991.
23. Brandt EN, Pope AM. Enabling America: Assessing the role of rehabilitation science and engineering. Washington (DC): National Academy Press; 1997.
24. Nagi SZ. An epidemiology of disability among adults in the United States. Milbank Mem Fund Q Health Soc. 1976;54(4):439-67. http://dx.doi.org/10.2307/3349677
25. Whiteneck G, Dijkers MP. Difficult to measure constructs: Conceptual and methodological issues concerning partici-pation and environmental factors. Arch Phys Med Rehabil. 2009;90(11 Suppl):S22-S35. http://dx.doi.org/10.1016/j.apmr.2009.06.009
26. Brown M, Dijkers MP, Gordon WA, Ashman T, Charatz H, Cheng Z. Participation objective, participation subjective: A measure of participation combining outsider and insider perspectives. J Head Trauma Rehabil. 2004;19(6):459-81. http://dx.doi.org/10.1097/00001199-200411000-00004
27. Cella DF, Bonomi AE. Measuring quality of life: 1995 update. Oncology. 1995;9(11 Suppl):47-60.
28. Campbell A, Converse PE, Rodgers WL. The quality of American life: Perceptions, evaluations, and satisfactions. New York (NY): Russell Sage Foundation; 1976.
29. Patrick DL, Erickson P. What constitutes quality of life? Concepts and dimensions. J Drug Ther Res. 1988;13(5): 152-58.
30. Kahneman D, Diener E, Schwarz N. Well-being: The foun-dations of hedonic psychology. New York (NY): Russell Sage Foundation; 1999.
31. Hart T, Sherer M, Whyte J, Polansky M, Novack TA. Awareness of behavioral, cognitive, and physical deficits in acute traumatic brain injury. Arch Phys Med Rehabil. 2004;85(9):1450-56. http://dx.doi.org/10.1016/j.apmr.2004.01.030
32. Hart T, Seignourel PJ, Sherer M. A longitudinal study of awareness of deficit after moderate to severe traumatic brain injury. Neuropsychol Rehabil. 2009;19(2):161-76. http://dx.doi.org/10.1080/09602010802188393
33. Hart T, Sherer M, Temkin N, Whyte J, Dikmen S, Heine-mann A, Bell K. Participant-proxy agreement on objective and subjective aspects of societal participation following traumatic brain injury. J Head Trauma Rehabil. 2010;25(5): 339-48. http://dx.doi.org/10.1097/HTR.0b013e3181c7e60b
34. Hammel J, Magasi S, Heinemann A, Whiteneck G, Bogner J, Rodriguez E. What does participation mean? An insider perspective from people with disabilities. Disabil Rehabil. 2008;30(19):1445-60. http://dx.doi.org/10.1080/09638280701625534
35. Willer B, Ottenbacher KJ, Coad ML. The community inte-gration questionnaire. A comparative examination. Am J Phys Med Rehabil. 1994;73(2):103-11. http://dx.doi.org/10.1097/00002060-199404000-00006
36. Dijkers M. Measuring the long-term outcomes of traumatic brain injury: A review of the Community Integration Ques-tionnaire. J Head Trauma Rehabil. 1997;12(6):74-91. http://dx.doi.org/10.1097/00001199-199712000-00007
37. Johnston MV, Hall KM. Outcomes evaluation in TBI reha-bilitation. Part I: Overview and system principles. Arch Phys Med Rehabil. 1994;75(12 Spec No):SC27-28.
38. Sander AM, Fuchs KL, High WM Jr, Hall KM, Kreutzer JS, Rosenthal M. The Community Integration Question-naire revisited: An assessment of factor structure and validity. Arch Phys Med Rehabil. 1999;80(10):1303-8. http://dx.doi.org/10.1016/S0003-9993(99)90034-5
39. Tepper S, Beatty P, DeJong G. Outcomes in traumatic brain injury: Self-report versus report of significant others. Brain Inj. 1996;10(8):575-81. http://dx.doi.org/10.1080/026990596124142
40. Hall K, Bushnik T, Lakisic-Kazazic B, Wright J, Canta-gallo A. Assessing traumatic brain injury outcome meas-ures for long-term follow-up of community-based individuals. Arch Phys Med Rehabil. 2001;82(3):367-74. http://dx.doi.org/10.1053/apmr.2001.21525
41. Zhang L, Abreu B, Gonzales V, Seale G, Masel B, Otten-bacher KJ. Comparison of the Community Integration Questionnaire, the Craig Handicap Assessment and Report-ing Technique, and the Disability Rating Scale in traumatic brain injury. J Head Trauma Rehabil. 2002;17(6):497-509. http://dx.doi.org/10.1097/00001199-200212000-00002
42. Hall KM, Johnston MV. Outcomes evaluation in TBI reha-bilitation. Part II: Measurement tools for a nationwide data system. Arch Phys Med Rehabil. 1994;75(12 Spec No): SC10-18.
43. Corrigan JD, Deming R. Psychometric characteristics of the Community Integration Questionnaire: Replication and extension. J Head Trauma Rehabil. 1995;10(4):14-27 http://dx.doi.org/10.1097/00001199-199508000-00005
44. Rosenthal M, Dijkers M, Harrison-Felix C, Nabors N, Witol A, Young ME, Englander JS. Impact of minority sta-tus on functional outcome and community integration fol-lowing traumatic brain injury. J Head Trauma Rehabil. 1996;11(5):40-57. http://dx.doi.org/10.1097/00001199-199610000-00005
45. Schmidt ME, Garvin LJ, Heinemann AW, Kelly JP. Gen-der- and age-related role changes following brain injury. J Head Trauma Rehabil. 1995;10(4):14-27. http://dx.doi.org/10.1097/00001199-199508000-00003
46. Sander AM, Pappadis MR, Davis LC, Clark AN, Evans G, Struchen MA, Mazzei DM. Relationship of race/ethnicity and income to community integration following traumatic brain injury: Investigation in a non-rehabilitation trauma sample. NeuroRehabilitation. 2009;24(1):15-27.
47. Sander AM, Clark A, Pappadis MR. What is community integration anyway?: Defining meaning following trau-matic brain injury. J Trauma Rehabil. 2010;25(2):121-27. http://dx.doi.org/10.1097/HTR.0b013e3181cd1635
48. Sherer M, Roebuck-Spencer T, Davis LC. Outcome assess-ment in traumatic brain injury clinical trials and prognostic studies. J Head Trauma Rehabil. 2010;25(2):92-98. http://dx.doi.org/10.1097/HTR.0b013e3181c9d887
49. Whiteneck GG, Dijkers MP, Heinemann AW, Bogner JA, Bushnik T, Cicerone KD, Corrigan JD, Hart T, Malec JF, Millis SR. Development of the participation assessment with recombined tools-Objective for use with traumatic brain injury. Arch Phys Med Rehabil. 2011;92(4):542-51. http://dx.doi.org/10.1016/j.apmr.2010.08.002
50. Syllabus detail [Internet]. Traumatic Brain Injury National Data and Statistical Center; 2010 [cited 2010 Apr 11]. Available from: http://www.tbindsc.org/SyllabusDetail.aspx?ID=300
51. Johnston MV, Goverover Y, Dijkers M. Community activi-ties and individuals' satisfaction with them: Quality of life in the first year after traumatic brain injury. Arch Phys Med Rehabil. 2005;86(4):735-45. http://dx.doi.org/10.1016/j.apmr.2004.10.031
52. Whiteneck GG, Charlifue SW, Gerhart KA, Overholser JD, Richardson GN. Quantifying handicap: A new measure of long-term rehabilitation outcomes. Arch Phys Med Reha-bil. 1992;73(6):519-26.
53. Malec J. The Mayo-Portland Adaptability Inventory [Internet]. San Jose (CA): Center for Outcome Measurement in Brain Injury; 2005 [cited 2010 May 13]. Available from: http://www.tbims.org/combi/mpai
54. Resnik L, Plow MA. Measuring participation as defined by the International Classification of Functioning, Disability and Health: An evaluation of existing measures. Arch Phys Med Rehabil. 2009;90(5):856-66. http://dx.doi.org/10.1016/j.apmr.2008.11.010
55. World Health Organization. ICIDH-2: International Classi-fication of Impairments, Activities, and Participation. A manual of dimensions for disablement and functioning. Geneva (Switzerland): World Health Organization; 1997.
56. Malec JF. The Mayo-Portland Participation Index: A brief and psychometrically sound measure of brain injury out-come. Arch Phys Med Rehabil. 2004;85(12):1989-96. http://dx.doi.org/10.1016/j.apmr.2004.01.032
57. Malec JF. Comparability of Mayo-Portland Adaptability Inventory ratings by staff, significant others and people with acquired brain injury. Brain Inj. 2004;18(6):563-75. http://dx.doi.org/10.1080/02699050310001646134
58. Erez AB, Rothschild E, Katz N, Tuchner M, Hartmen-Maeir A. Executive functioning, awareness, and participa-tion in daily life after mild traumatic brain injury: A pre-liminary study. Am J Occup Ther. 2009;63(5):634-40. http://dx.doi.org/10.5014/ajot.63.5.634
59. Malec JF, Kragness M, Evans RW, Finlay KL, Kent A, Lezak MD. Further psychometric evaluation and revision of the Mayo-Portland Adaptability Inventory in a national sample. J Head Trauma Rehabil. 2003;18(6):479-92. http://dx.doi.org/10.1097/00001199-200311000-00002
60. Malec JF, Thompson JM. Relationship of the Mayo-Portland Adaptability Inventory to functional outcome and cognitive performance measures. J Head Trauma Rehabil. 1994;9(4): 1-15. http://dx.doi.org/10.1097/00001199-199412000-00003
61. Bohac DL, Malec JF, Moessner AM. Factor analysis of the Mayo-Portland Adaptability Inventory: Structure and validity. Brain Inj. 1997;11(7):469-82.
62. Malec JF. Impact of comprehensive day treatment on socie-tal participation for persons with acquired brain injury. Arch Phys Med Rehabil. 2001;82(7):885-95. http://dx.doi.org/10.1053/apmr.2001.23895
63. Malec JF, Buffington AL, Moessner AM, Degiorgio L. A medical/vocational case coordination system for persons with brain injury: An evaluation of employment outcomes. Arch Phys Med Rehabil. 2000;81(8):1007-15.http://dx.doi.org/10.1053/apmr.2000.6980
64. Malec J, Degiorgio L. Characteristics of successful and unsuccessful completers of 3 postacute brain injury reha-bilitation pathways. Arch Phys Med Rehabil. 2002;88(12): 1759-64. http://dx.doi.org/10.1053/apmr.2002.36072
65. U.S. Department of Education. NIDRR Long-range plan for fiscal years 2005-09: Executive summary [Internet]. Washington (DC): U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research; 2007 [updated 2007 Mar; cited 2010 Jun 20]. Available from: http://www.ncddr.org/new/announcements/lrp/fy2005-2009/exec-summ.html
66. Carlozzi NE, Tulsky DS, Kisala P. Traumatic brain injury (TBI) patient reported outcome measure: Identification of issues relevant to individuals with TBI. Arch Phys Med Rehabil. 2011;92(10 Suppl 1):S52-S60. http://dx.doi.org/10.1016/j.apmr.2010.12.046
67. Steinfield C, Ellison NB, Lampe C. Social capital, self-esteem, and use of online social network sites: A longitudi-nal analysis. J App Develop Psychol. 2008;29:434-45. http://dx.doi.org/10.1016/j.appdev.2008.07.002
68. Park N, Kee KF, Valenzuela S. Being immersed in social networking environment: Facebook groups, uses and grati-fications, and social outcomes. Cyberpsychol Behav. 2009; 12(6):729-33. http://dx.doi.org/10.1089/cpb.2009.0003
69. U.S. Department of Health and Human Services FDA Center for Drug Evaluation and Research; U.S. Department of Health and Human Services FDA Center for Biologics Evaluation and Research; U.S. Department of Health and Human Services FDA Center for Devices and Radiological Health. Guidance for industry: Patient-reported outcome measures: Use in medical product development to support labeling claims: Draft guidance. Health Qual Life Out-comes. 2006;4:79 http://dx.doi.org/10.1186/1477-7525-4-79
70. DeWalt D, Rothrock N, Yount S, Stone AA; PROMIS qualita-tive item review. Evaluation of item candidates: The PROMIS qualitative item review. Med Care. 2007;45(5 Suppl 1):S12-21 http://dx.doi.org/10.1097/01.mlr.0000254567.79743.e2
71. Schwartz S, Sudman S. Answering questions: Methodology for determining cognitive and communicative processes in survey research. San Francisco (CA): Josey-Bass; 1996.
72. Bond TG, Fox CM. Applying the Rasch model. Mahwah (NJ): Lawrence Erlbaum Associates; 2001.
73. Linacre JM, Heinemann AW, Wright BD, Granger CV, Hamilton BB. The structure and stability of the Functional Independence Measure. Arch Phys Med Rehabil. 1994; 75(2):127-32.
74. Gandek B, Sinclair SJ, Jette AM, Ware JE Jr. Development and initial psychometric evaluation of the Participation Measure for Post-Acute Care (PM-PAC). Am J Phys Med Rehabil. 2007;86(1):57-71. http://dx.doi.org/10.1097/01.phm.0000233200.43822.21
75. Bode RK, Hahn EA, DeVellis R, Cella D; Patient-Reported Outcomes Measurement Information System Social Domain Working Group. Measuring participation: The patient-reported outcomes measurement information system experi-ence. Arch Phys Med Rehabil. 2010;91(9 Suppl):S60-65. http://dx.doi.org/10.1016/j.apmr.2009.10.035
76. Seekins T, Ipsen C, Arnold NL. Using Ecological Momen-tary Assessment to measure participation: A preliminary study. Rehabil Psychol. 2007;52(3):319-30.http://dx.doi.org/10.1037/0090-5550.52.3.319