Design of the Swiss spinal cord injury cohort study

American Journal of Physical Medicine and Rehabilitation

Volumn 90, Issue 11 SUPPL., 2011, Pages

  Post, Marcel W M ^a,b   Brinkhof, Martin W G ^a   Von Elm, Erik ^a,c   Boldt, Christine ^a   Brach, Mirjam ^a   Fekete, Christine ^a   Eriks Hoogland, Inge ^a   Curt, Armin ^d   Stucki, Gerold ^a,e,f  

^a SWISS PARAPLEGIC RESEARCH   (Switzerland)

^b UNIVERSITY MEDICAL CENTER UTRECHT   (Netherlands)

^c UNIVERSITY OF FREIBURG   (Germany)

^d UNIVERSITY OF ZURICH   (Switzerland)

^e UNIVERSITY OF LUCERNE   (Switzerland)

^f Centre for the Family of International Classifications in German   (Switzerland)

Author keywords

Cohort Studies; ICF; Research Design; Spinal Cord Injuries; SwiSCI

Indexed keywords

ARTICLE; CLASSIFICATION; COHORT ANALYSIS; DISABILITY; EMPLOYMENT; EPIDEMIOLOGY; HEALTH SURVEY; HUMAN; INFORMATION PROCESSING; LONGITUDINAL STUDY; METHODOLOGY; QUALITY OF LIFE; RETROSPECTIVE STUDY; SPINAL CORD INJURY; SWITZERLAND;

COHORT STUDIES; DATA COLLECTION; DISABILITY EVALUATION; EMPLOYMENT; EPIDEMIOLOGIC RESEARCH DESIGN; HEALTH SURVEYS; HUMANS; LONGITUDINAL STUDIES; QUALITY OF LIFE; RETROSPECTIVE STUDIES; SPINAL CORD INJURIES; SWITZERLAND;

EID: 80053967956     PISSN: 08949115     EISSN: None     Source Type: Journal    
DOI: 10.1097/PHM.0b013e318230fd41     Document Type: Review

References (74)

1. Liverman CT, Altevogt BM, Joy JE, et al (eds): Spinal Cord Injury. Progress, Promise, and Priorities. Washington, DC: Institute of Medicine-National Academies Press; 2005
2. Chen D, Apple DF Jr, Hudson LM, et al: Medical complications during acute rehabilitation following spinal cord injuryVcurrent experience of the Model Systems. Arch Phys Med Rehabil 1999;80:1397-401 (Pubitemid 29526636)
3. Chiodo AE, Scelza WM, Kirshblum SC, et al: Spinal cord injury medicine. 5. Long-term medical issues and health maintenance. Arch Phys Med Rehabil 2007;88:S76-83 (Pubitemid 46281876)
4. Kennedy P, Lude P, Taylor N: Quality of life, social participation, appraisals and coping post spinal cord injury: A review of four community samples. Spinal Cord 2006;44:95-105 (Pubitemid 43190353)
5. Scelza WM, Kirshblum SC, Wuermser LA, et al: Spinal cord injury medicine. 4. Community reintegration after spinal cord injury. Arch Phys Med Rehabil 2007;88:S71-5
6. Hagen EM, Lie SA, Rekland T, et al: Mortality after traumatic spinal cord injury: 50 years of follow-up. J Neurol Neurosurg Psychiatry 2010;81:368-73
7. Kemp B, Thompson L: Aging and spinal cord injury: Medical, functional, and psychosocial changes. SCI Nurs 2002;19:51-60
8. Charlifue S, Jha A, Lammertse D: Aging with spinal cord injury. Phys Med Rehabil Clin N Am 2010;21: 383-402
9. Stucki G, Grimby G: Organizing human functioning and rehabilitation research into distinct scientific fields. Part I: Developing a comprehensive structure from the cell to society. J Rehabil Med 2007;39:293-8
10. Post MW, Kirchberger I, Scheuringer M, et al: Outcome parameters in spinal cord injury research: A systematic review using the International Classification of Functioning, Disability and Health (ICF) as a reference. Spinal Cord 2010;48:522-8
11. Eriks-Hoogland I, Cieza A, Post M, et al: Category specification and measurement instruments in large spinal cord injury studies: a comparison using the international classification of functioning, disability, and health as a reference. Am J Phys Med Rehab 2011;90(suppl 2):S39-49
12. Kirchberger I, Cieza A, Biering-Sorensen F, et al: ICF Core Sets for individuals with spinal cord injury in the early post-acute context. Spinal Cord 2010;48: 297-304
13. Cieza A, Kirchberger I, Biering-Sorensen F, et al: ICF Core Sets for individuals with spinal cord injury in the long-term context. Spinal Cord 2010;48:305-12
14. Biering-Sørensen F, Scheuringer M, Baumberger M, et al: Developing core sets for persons with spinal cord injury based on the international classification of functioning, disability and health as a way to specify functioning. Spinal Cord 2006;44:541-6 (Pubitemid 44338759)
15. Cieza A, Oberhauser C, Bickenbach J, et al: Towards a minimal generic set of domains of functioning and health. Bull WHO (in press)
16. World Medical Association: Declaration of Helsinki. Ethical Principles for Medical Research Involving Human Subjects. 2008. Available at: http://www.wma.net/en/30publications/10policies/b3/index.html.Accessed on: January 12, 2010
17. Council for International Organizations of Medical Sciences: International Ethical Guidelines for Epidemiological Studies. Geneva, Switzerland: CIOMS; 2009
18. Akademien der Wissenschaften Schweiz. Grundsätze der wissenschaftlichen Integrität. 28. Februar 2008. Available at: www.samw.ch/de/Ethik/Wissenschaftliche-Integritaet.html. Accessed on: August 16, 2010
19. Cieza A, Boldt C, Ballert CS, et al: Setting up a Cohort Study on functioning: deciding what to measure. Am J Phys Med Rehabil 2011;90(suppl 2):S17-28
20. Eriks-Hoogland IE, Brinkhof MWG, Al-Khodairy A, et al: Measuring body structures and body functions from the international classification of functioning, disability, and health perspective: considerations for biomedical parameters in spinal cord injury research. Am J Phys Med Rehabil 2011;90(suppl 2):S50-65
21. Escorpizo R, Graf S, Marti A, et al: Domain sets and measurement instruments on participation and environmental factors in spinal cord injury research. Am J Phys Med Rehabil 2011;90(suppl 2):S66-78
22. Geyh S, Müller R, Peter C, et al: Capturing the psychologic-personal perspective in spinal cord injury. Am J Phys Med Rehabil 2011;90(suppl 2):S79-96
23. Widerstrom-Noga E, Biering-Sorensen F, Bryce T, et al: The international spinal cord injury pain basic data set. Spinal Cord 2008;46:818-23
24. Biering-Sorensen F, Craggs M, Kennelly M, et al: International lower urinary tract function basic spinal cord injury data set. Spinal Cord 2008;46:325-30 (Pubitemid 351630957)
25. Fekete C, Boldt C, Post M, et al: How to measure what matters: development and application of guiding principles to select measurement instruments in an international classification of functioning, disability, and health-based epidemiologic study on functioning. Am J Phys Med Rehabil 2011;90(suppl 2): S29-38
26. DeVivo M, Biering-Sorensen F, Charlifue S, et al: International Spinal Cord Injury Core Data Set. Spinal Cord 2006;44:535-40 (Pubitemid 44338758)
27. Brinkhof M, Baumberger M: for the SwiSCI study group. SCI characteristics and outcomes of first rehabilitation: First evidence from the Swiss Spinal Cord Injury Cohort Study (SwiSCI). Paper presented at: International Conference on Spinal Cord Medicine and Rehabilitation. Washington DC, 2011
28. Edwards P: Questionnaires in clinical trials: Guidelines for optimal design and administration. Trials 2010;11:2
29. Anderson K, Aito S, Atkins M, et al: Functional recovery measures for spinal cord injury: An evidence-based review for clinical practice and research. J Spinal Cord Med 2008;31:133-44 (Pubitemid 351951348)
30. van der Zee CH, Priesterbach AR, van der Dussen L, et al: Reproducibility of three self-report participation measures: The ICF Measure of Participation and Activities Screener, the Participation Scale, and the Utrecht Scale for Evaluation of Rehabilitation-Participation. J Rehabil Med 2010;42: 752-7
31. Washburn RA, Zhu W, McAuley E, et al: The physical activity scale for individuals with physical disabilities: Development and evaluation. Arch Phys Med Rehabil 2002;83:193-200 (Pubitemid 34121618)
32. Post MW, de Witte LP, Reichrath E, et al: Development and validation of IMPACT-S, an ICF-based questionnaire to measure activities and participation. J Rehabil Med 2008;40:620-7
33. Kalpakjian CZ, Scelza WM, Forchheimer MB, et al: Preliminary reliability and validity of a Spinal Cord Injury Secondary Conditions Scale. J Spinal Cord Med 2007;30:131-9 (Pubitemid 46942228)
34. Sangha O, Stucki G, Liang MH, et al: The Self- Administered Comorbidity Questionnaire: A new method to assess comorbidity for clinical and health services research. Arthritis Rheum 2003;49:156-63 (Pubitemid 36418272)
35. Itzkovich M, Gelernter I, Biering-Sorensen F, et al: The Spinal Cord Independence Measure (SCIM) version III: Reliability and validity in a multi-center international study. Disabil Rehabil 2007;29:1926-33 (Pubitemid 350168028)
36. Spinal Cord Injury Information Network. 2011; Available at: http://www.spinalcord.uab.edu/show.asp?durki=21392. Accessed on: February 14, 2011
37. Geyh S, Fellinghauer BA, Kirchberger I, et al: Crosscultural validity of four quality of life scales in persons with spinal cord injury. Health Qual Life Outcomes 2010;8:94
38. Whiteneck GG, Charlifue SW, Frankel HL, et al: Mortality, morbidity, and psychosocial outcomes of persons spinal cord injured more than 20 years ago. Paraplegia 1992;30:617-30 (Pubitemid 23010936)
39. Krause JS, Coker JL: Aging after spinal cord injury: A 30-year longitudinal study. J Spinal Cord Med 2006;29:371-6
40. Menard S (ed): Handbook of Longitudinal Research: Design, Measurement, and Analysis. Burlington: Academic Press; 2008
41. Morton LM, Cahill J, Hartge P: Reporting participation in epidemiologic studies: A survey of practice. Am J Epidemiol 2006;163:197-203 (Pubitemid 43145745)
42. Whiteneck G, Dijkers MP: Difficult to measure constructs: Conceptual and methodological issues concerning participation and environmental factors. Arch Phys Med Rehabil 2009;90:S22-35
43. Molenberghs G, Kenward MG: Missing Data in Clinical Studies. West Sussex, UK: John Wiley and Sons Ltd; 2007
44. Kirchberger I, Cieza A, Biering-Sorensen F, et al: ICF Core Sets for individuals with spinal cord injury in the early post-acute context. Spinal Cord 2010; 48:297-304
45. Watson D, Clark LA, Tellegen A: Development and validation of brief measures of positive and negative affect: the PANAS scales. J Pers Soc Psychol 1988; 54:1063-70
46. Stucki G, Reinhardt JD, Cieza A, et al: Developing Swiss paraplegic research: Building a research institution from the comprehensive perspective. Disabil Rehabil 2007;14:1-16
47. Ware JE Jr, Sherbourne CD: The MOS 36-item shortform health survey (SF-36). I. Conceptual framework and item selection. Med Care 1992;30:473-83
48. Forchheimer M, McAweeney M, Tate DG: Use of the SF-36 among persons with spinal cord injury. Am J Phys Med Rehabil 2004;83:390-5 (Pubitemid 38520619)
49. Post MWM, van der Zee CH, Hennink J, et al: Validity of the Utrecht Scale for Evaluation of Rehabilitation- Participation (USER-P). Disabil Rehabil (in press)
50. van der Zee CH, Kap A, Rambaran Mishre R, et al: Responsiveness of four participation measures for outcomes of outpatient rehabilitation. J Rehabil Med (in press)
51. WHOQOL Group: Development of the World Health Organization WHOQOL-BREF quality of life assessment. The WHOQOL Group. Psychol Med 1998;28: 551-8
52. Jensen MP, Widerstrom-Noga E, Richards JS, et al: Reliability and validity of the International Spinal Cord Injury Basic Pain Data Set items as self-report measures. Spinal Cord 2010;48:230-8
53. Reinhardt JD, Post MWM: Measurement and evidence of environmental determinants of participation in spinal cord injury: A systematic review of the literature. Top Spinal Cord Inj Rehabil 2010;14:26-48
54. Jerusalem M, Schwarzer R: Self-efficacy as a resource factor in stress appraisal processes, in Schwarzer R (ed): Self-efficacy: Thought control of action. Washington, DC: Hemisphere Publishing Corp; 1992:195-213
55. Crumbaugh JC: Aging and adjustment: The applicability of logotherapy and the purpose-in-life test. Gerontologist 1972;12:418-20
56. Carver CS: You want to measure coping but your protocol's too long: Consider the brief COPE. Int J Behav Med 1997;4:92-100 (Pubitemid 127532310)
57. Carver CS, Scheier MF, Weintraub JK: Assessing coping strategies: A theoretically based approach. J Pers Soc Psychol 1989;56:267-83
58. Gosling SD, Rentfrow PJ, Swann WB: A very brief measure of the Big-Five personality domains. J Res Pers 2003;37:504-28 (Pubitemid 37445626)
59. Swiss Health Survey 2007. Neuchatel: Federal Statistical Office SC; 2007
60. Pruitt SD, Wahlgren DR, Epping-Jordan JE, et al: Health behavior in persons with spinal cord injury: Development and initial validation of an outcome measure. Spinal Cord 1998;36:724-31 (Pubitemid 28479078)
61. Bloemen-Vrencken JH, de Witte LP, Post MW, et al: Health behaviour of persons with spinal cord injury. Spinal Cord 2007;45:243-9 (Pubitemid 46340847)
62. European Social Survey: 2009. Available at: http://www. europeansocialsurvey.org/.Accessed on: January 28, 2011
63. European Union Statistics on Income and Living Conditions (EU-SILC): 2010. Available at: http://epp.eurostat.ec.europa.eu/portal/page/portal/ microdata/eu; silc.Accessed January 28, 2011
64. Siegrist J, Wege N, Puhlhofer F, et al: A short generic measure of work stress in the era of globalization: Effort-reward imbalance. Int Arch Occup Environ Health 2009;82:1005-13
65. Spoerri A, Zwahlen M, Egger M, et al: The Swiss National Cohort: A unique database for national and international researchers. Int J Public Health 2010; 55:239-42
66. Stucki G, Reinhardt JD, Grimby G, et al: Developing FHuman Functioning and Rehabilitation Research; from the comprehensive perspective. J Rehabil Med 2007;39:665-71
67. Fineberg HV: Science and medicine in the 21st century: Opportunities for rehabilitation medicine. Am J Phys Med Rehabil 2005;84:928-31 (Pubitemid 41821642)
68. Stucki G, Cieza A, Melvin J: The International Classification of Functioning, Disability and Health (ICF): A unifying model for the conceptual description of the rehabilitation strategy. J Rehabil Med 2007;39: 279-85
69. Stover SL, DeVivo MJ, Go BK: History, implementation, and current status of the National Spinal Cord Injury Database. Arch Phys Med Rehabil 1999;80:1365-71 (Pubitemid 29526632)
70. O'Connor PJ: Trends in spinal cord injury. Accid Anal Prev 2006;38:71-7
71. Curt A, Schwab ME, Dietz V: Providing the clinical basis for new interventional therapies: Refined diagnosis and assessment of recovery after spinal cord injury. Spinal Cord 2004;42:1-6 (Pubitemid 38174973)
72. de Groot S, Dallmeijer AJ, Post MW, et al: Demographics of the Dutch multicenter prospective cohort study FRestoration of mobility in spinal cord injury rehabilitation; . Spinal Cord 2006;44:668-75 (Pubitemid 44721159)
73. Stucki G: Developing human functioning and rehabilitation research. Part I: Academic training programs. J Rehabil Med 2007;39:323-33
74. Stucki G, Celio M: Developing human functioning and rehabilitation research. Part II: Interdisciplinary university centers and national and regional collaboration networks. J Rehabil Med 2007;39:334-42