Development and psychometric characteristics of the SCI-QOL Bladder Management Difficulties and Bowel Management Difficulties item banks and short forms and the SCI-QOL Bladder Complications scale

Journal of Spinal Cord Medicine

Volumn 38, Issue 3, 2015, Pages 288-302

  Tulsky, David S ^a,b   Kisal, Pamela A ^a   Tate, Denise G ^c   Spungen, Ann M ^d,e   Kirshblum, Steven C ^f,g  

^a UNIVERSITY OF DELAWARE   (United States)

^b KESSLER FOUNDATION   (United States)

^c UNIVERSITY OF MICHIGAN MEDICAL SCHOOL   (United States)

^d VETERANS AFFAIRS MEDICAL CENTER   (United States)

^e MOUNT SINAI SCHOOL OF MEDICINE   (United States)

^f KESSLER INSTITUTE FOR REHABILITATION   (United States)

^g RUTGERS NEW JERSEY MEDICAL SCHOOL   (United States)

Author keywords

Neurogenic; Neurogenic bowel; Patient reported outcomes assessment; Psychometrics; Quality of life; Spinal cord injuries; Urinary bladder

Indexed keywords

ADULT; ARTICLE; BLADDER AND BOWEL MANAGEMENT; FEMALE; HUMAN; MAJOR CLINICAL STUDY; MALE; OUTCOME ASSESSMENT; PSYCHOMETRY; QUALITY OF LIFE; RATING SCALE; SPINAL CORD INJURY; SPINAL CORD INJURY QUALITY OF LIFE BLADDER COMPLICATIONS SCALE; SPINAL CORD INJURY QUALITY OF LIFE BLADDER MANAGEMENT DIFFICULTIES AND BOWEL MANAGEMENT DIFFICULTIES; URINARY TRACT INFECTION; BLADDER; CLASSIFICATION; INJURY SCALE; INTESTINE; MIDDLE AGED; PHYSIOLOGY; PSYCHOLOGY; QUESTIONNAIRE; SPINAL CORD INJURIES;

ADULT; FEMALE; HUMANS; INTESTINES; MALE; MIDDLE AGED; PSYCHOMETRICS; QUALITY OF LIFE; SPINAL CORD INJURIES; SURVEYS AND QUESTIONNAIRES; TRAUMA SEVERITY INDICES; URINARY BLADDER;

EID: 84941220854     PISSN: 10790268     EISSN: 20457723     Source Type: Journal    
DOI: 10.1179/2045772315Y.0000000030     Document Type: Article

References (62)

1. Yeo J, Walsh J, Rutkowski S, Soden R, Craven M, Middleton J. Mortality following spinal cord injury. Spinal Cord 1998;36(5):329-36.
2. DeVivo M, Chen Y. Trends in new injuries, prevalent cases, and aging with spinal cord injury. Arch Phys Med Rehabil 2011; 92(3):332-8.
3. Ku JH. The management of neurogenic bladder and quality of life in spinal cord injury. BJU Int 2006;98(4):739-45.
4. Benevento BT, Sipski ML. Neurogenic bladder, neurogenic bowel, and sexual dysfunction in people with spinal cord injury. Phys Ther 2002;82(6):601-12.
5. Tate D, Duggan C. Stress and coping over the life course: a perspective on women with spinal cord injury. Ann Arbor, Michigan: University of Michigan; 2006. Final report, project #H133G020060.
6. Walsh K, Troxel SA, Stone AR. An assessment of the use of a continent catheterizable stoma in female tetraplegics. BJU Int 2004; 94(4):595-7.
7. Hicken BL, Putzke JD, Richards JS. Bladder management and quality of life after spinal cord injury. Am J Phys Med Rehabil 2001;80(12):916-22.
8. Vaidyanathan S, Soni BM, Singh G, Oo T, Hughes PL. Barriers to implementing intermittent catheterisation in spinal cord injury patients in Northwest Regional Spinal Injuries Centre, Southport, UK. Scientific World J 2011;11:77-85.
9. Rockwood TH. Incontinence severity and QOL scales for fecal incontinence. Gastroenterol. 2004;126:S106-S13.
10. Consortium for Spinal Cord Medicine. Bladder management for adults with spinal cord injury: A Clinical Practice Guideline for Health Care Providers. Washington, DC: Paralyzed Veterans of America; 2006.
11. Wyndaele J, Kovindha A, Madersbacher H, Radziszewski P, Ruffion A, Schurch B, et al. Neurologic urinary incontinence. Neurourol Urodyn 2010;29(1):159-64.
12. Lenherr SM, Cameron AP. Voiding dysfunction and upper tract deterioration after spinal cord injury. Curr Bladder Dysfunct Rep 2013;8(4):289-96.
13. Renwick R, Nourhaghighi N, Manns PJ, Rudman DL. Quality of life for people with physical disabilities: a new instrument. Int J Rehabil Res 2003;26(4):279-87.
14. Welk B, Morrow S, Madarasz W, Baverstock R, Macnab J, Sequeira K. The validity and reliability of the neurogenic bladder symptom score (NBSS). J Urol 2014;192(2):452-7.
15. Bonniaud V, Bryant D, Parratte B, Guyatt G. Development and validation of the short form of a urinary quality of life questionnaire: SF-Qualiveen. J Urol 2008;180(6):2592-8.
16. Costa P, Perrouin-Verbe B, Colvez A, Didier JP, Marquis P, Marrel A, et al. Quality of life in spinal cord injury patients with urinary difficulties-development and validation of qualiveen. Eur Urol 2001;39(1):107-13.
17. Glickman S, Kamm M. Bowel dysfunction in spinal-cord-injury patients. Lancet 1996;347(9016):1651-3.
18. Anderson KD. Targeting recovery: priorities of the spinal cordinjured population. J Neurotrauma 2004;21(10):1371-83.
19. Krassioukov A, Eng JJ, Claxton G, Sakakibara BM, Shum S, SCIRE Research Team. Neurogenic bowel management after spinal cord injury: a systematic review of the evidence. Spinal Cord 2010;48(10):718-33.
20. Cardenas DD, Hoffman JM, Kirshblum S, McKinley W. Etiology and incidence of rehospitalization after traumatic spinal cord injury: a multicenter analysis. Arch Phys Med Rehabil 2004;85(11):1757-63.
21. DeVivo MJ, Farris V. Causes and costs of unplanned hospitalizations among persons with spinal cord injury. Top Spinal Cord Inj Rehabil 2011;16(4):53-61.
22. Davidoff G, Schultz J, Lieb T, Andrews K, Wardner J, Hayes C, et al. Rehospitalization after initial rehabilitation for acute spinal cord injury: incidence and risk factors. Arch Phys Med Rehabil 1990;71(2):121-4.
23. Faaborg PM, Christensen P, Finnerup N, Laurberg S, Krogh K. The pattern of colorectal dysfunction changes with time since spinal cord injury. Spinal Cord 2008;46(3):234-8.
24. Finnerup NB, Faaborg P, Krogh K, Jensen TS. Abdominal pain in long-term spinal cord injury. Spinal Cord. 2008;46(3):198-203.
25. Del Popolo G, Mosiello G, Pilati C, Lamartina M, Battaglino F, Buffa P, et al. Treatment of neurogenic bowel dysfunction using transanal irrigation: a multicenter Italian study. Spinal Cord. 2008;46(7):517-22.
26. Goetz LL, Nelson AL, Guihan M, Bosshart HT, Harrow JJ, Gerhart KD, et al. Provider adherence to implementation of clinical practice guidelines for neurogenic bowel in adults with spinal cord injury. J Spinal Cord Med. 2005;28(5):394-406.
27. Keshavarzian A, Barnes W, Bruninga K, Nemchausky B, Mermall H, Bushnell D. Delayed colonic transit in spinal cord-injured patients measured by indium-111 Amberlite scintigraphy. Am J Gastroenterol 1995;90(8):1295-300.
28. Menardo G, Bausano G, Corazziari E, Fazio A, Marangi A, Genta V, et al. Large-bowel transit in paraplegic patients. Dis Colon Rectum 1987;30(12):924-8.
29. Haas U, Geng V, Evers G, Knecht H. Bowel management in patients with spinal cord injury - a multicentre study of the German speaking society of paraplegia (DMGP). Spinal Cord 2005;43(12):724-30.
30. Stone JM, Nino-Murcia M, Wolfe VA, Perkash I. Chronic gastrointestinal problems in spinal cord injury patients: a prospective analysis. Am J Gastroenterol 1990;85(9):1114-9.
31. Frank L, Kleinman L, Farup C, Taylor L, Miner P. Psychometric validation of a constipation symptom assessment questionnaire. Scand J Gastroenterol 1999;34(9):870-7.
32. Marquis P, De La Loge C, Dubois D, McDermott A, Chassany O. Development and validation of the patient assessment of constipation quality of life questionnaire. Scand J Gastroenterol 2005;40(5):540-51.
33. Krogh K, Christensen P, Sabroe S, Laurberg S. Neurogenic bowel dysfunction score. Spinal Cord 2006;44(10):625-31.
34. Sansoni J, Hawthorne G, Marosszeky N, Moore K, Fleming G, Owen E. Technical manual and instructions for the revised incontinence and patient satisfaction tools. New South Wales, Australia: Centre for Health Service Development, University of Wollongong; 2011.
35. Akkoc Y, Ersöz M, Yildiz N, Erhan B, Alaca R, Gök H, et al. Effects of different bladder management methods on the quality of life in patients with traumatic spinal cord injury. Spinal Cord 2013;51(3):226-31.
36. Stöhrer M, Blok B, Castro-Diaz D, Chartier-Kastler E, Del Popolo G, Kramer G, et al. EAU guidelines on neurogenic lower urinary tract dysfunction. Eur Urol 2009;56(1):81-8.
37. Feifer A, Corcos J. Contemporary role of suprapubic cystostomy in treatment of neuropathic bladder dysfunction in spinal cord injured patients. Neurourol Urodyn 2008;27(6):475-9.
38. Sekar P, Wallace DD, Waites KB, DeVivo MJ, Lloyd LK, Stover SL, et al. Comparison of long-term renal function after spinal cord injury using different urinary management methods. Arch Phys Med Rehabil 1997;78(9):992-7.
39. Böthig R, Hirschfeld S, Thietje R. Quality of life and urological morbidity in tetraplegics with artificial ventilation managed with suprapubic or intermittent catheterisation. Spinal Cord 2012;50(3):247-51.
40. Cameron AP, Rodriguez GM, Schomer KG. Systematic Review of urological followup after spinal cord injury. J Urol 2012;187(2):391-7.
41. Cameron A.P. , WallnerL.P., ForchheimerM.B., ClemensJ.Q., DunnR.L., RodriguezG., et al. Medical and psychosocial complications associated with method of bladder management after traumatic spinal cord injury. Arch Phys Med Rehabil 2011;92(3):449-56.
42. Pannek J, Kullik B. Does optimizing bladder management equal optimizing quality of life? Correlation between health-related quality of life and urodynamic parameters in patients with spinal cord lesions. Urology 2009;74(2):263-6.
43. El-Masri WS, Chong T, Kyriakider AE, Wang D. Long-term follow-up study of outcomes of bladder management in spinal cord injury patients under the care of the Midlands centre for spinal injuries in sswestry. Spinal Cord 2012;50(1): 14-21.
44. Stiens SA, Bergman SB, Goetz LL. Neurogenic bowel dysfunction after spinal cord injury: clinical evaluation and rehabilitative management. Arch Phys Med Rehabil 1997;78(3, Supplement 1): S86-S102.
45. Berkowitz M, Harvey C, Greene CG, Wilson SE. The economic consequences of traumatic spinal cord injury. New York, NY: Demos Medical Publishing; 1992.
46. Oh S, Shin H, Paik N, Yoo T, Ku J. Depressive symptoms of patients using clean intermittent catheterization for neurogenic bladder secondary to spinal cord injury. Spinal Cord 2006;44(12):757-62.
47. Borzyskowski T, Cox A, Edwards M, Owen A. Neuropathic bladder and intermittent catheterization: social and psychological impact on families. Dev Med Child Neurol 2004;46(3):160-7.
48. Weitzenkamp DA, Gerhart KA, Charlifue SW, Whiteneck GG, Savic G. Spouses of spinal cord injury survivors: the added impact of caregiving. Arch Phys Med Rehabil 1997;78(8): 822-7.
49. Kolakowsky-Hayner SA, Kishore R. Caregiver functioning after traumatic injury. NeuroRehabilitation 1999;13(1):27-33.
50. Samejima F, van der Liden W, Hambleton R. The graded response model. Handbook of modern item response theory. New York: Springer; 1996. p. 85-100.
51. Lai JS. Differential item functioning (DIF). In: Cella D, (ed.) Item reponse theory modeling at CORE. Chicago, IL: Northwestern University; 2002. p. 28-44.
52. Tulsky DS, Kisala PA, Victorson D, Tate DG, Heinemann AW, Charlifue S, et al. Overview of the Spinal Cord Injury - Quality of Life (SCI-QOL) measurement system. J Spinal Cord Med 2015;38(3):257-69.
53. Tulsky DS, Kisala PA, Victorson D, Choi SW, Gershon R, Heinemann AW, et al. Methodology for the development and calibration of the SCI-QOL item banks. J Spinal Cord Med 2015;38(3):270-87.
54. Tulsky DS, Kisala PA, Victorson D, Tate D, Heinemann AW, Amtmann D, et al. Developing a contemporary patient-reported outcomes measure for spinal cord injury. Arch Phys Med Rehabil 2011;92(10 Suppl):S44-51.
55. Cella D, Nowinski C, Peterman A, Victorson D, Miller D, Lai J-S, et al. The neurology quality-of-life measurement initiative. Arch Phys Med Rehabil 2011;92(10, Supplement):S28-S36.
56. Willis GB. Cognitive interviewing: a tool for improving questionnaire design. Thousand Oaks, CA: Sage Publications; 2005.
57. Eremenco SL, Cella D, Arnold BJ. A comprehensive method for the translation and cross-cultural validation of health status questionnaires. Eval Health Prof 2005;28(2):212-32.
58. MetaMetrics. The LEXILE framework for reading. Durham, NC: MetaMetrics Inc; 1995.
59. Kirshblum SC, Burns SP, Biering-Sørensen F, Donovan W, Graves DE, Jha A, et al. International standards for neurological classification of spinal cord injury (Revised 2011). J Spinal Cord Med 2011;34(6):535-46.
60. Gershon R, Rothrock NE, Hanrahan RT, Jansky LJ, Harniss M, Riley W. The development of a clinical outcomes survey research application: assessment center. Qual Life Res 2010;19(5):677-85.
61. Bjorner JB, Smith K, Stone C, Sun X. IRTFIT: A Macro for Item Fit and Local Dependence Tests under IRT Models 2007.
62. Choi SW, Gibbons LE, Crane PK. lordif: an R package for detecting differential item functioning using iterative hybrid ordinal logistic regression/item response theory and monte carlo simulations. J Stat Softw 2011;39(8):1-30.