Study protocol: To investigate effects of highly specialized rehabilitation for patients with multiple sclerosis. A randomized controlled trial of a personalized, multidisciplinary intervention

BMC Health Services Research

Volumn 12, Issue 1, 2012, Pages

  Sørensen, Jan ^a   Lee, Anne ^a   Løvendahl, Brita ^b   Nørgaard, Michael ^b   Bay, Jette ^c   Rasmussen, Peter Vestergaard ^d   Boesen, Finn ^b  

^a UNIVERSITY OF SOUTHERN DENMARK   (Denmark)

^b Sclerosis Hospitals in Denmark Haslev and Ry   (Denmark)

^c Danish Multiple Sclerosis Society   (Denmark)

^d AARHUS UNIVERSITY   (Denmark)

Author keywords

[No Author keywords available]

Indexed keywords

EID: 84867856541     PISSN: None     EISSN: 14726963     Source Type: Journal    
DOI: 10.1186/1472-6963-12-306     Document Type: Article

References (64)

1. Prevalence of multiple sclerosis in Denmark 1950-2005. Bentzen J, Flachs EM, Stenager E, Bronnum-Hansen H, Koch-Henriksen N, Mult Scler 2010 16 5 520 525 10.1177/1352458510364197 20215479
2. Multidisciplinary rehabilitation for adults with multiple sclerosis. Khan F, Turner-Stokes L, Ng L, Kilpatrick T, J Neurol Neurosurg Psychiatry 2008 79 2 114 18202203
3. Rehabilitation challenges in multiple sclerosis. Burks JS, Bigley GK, Hill HH, Annals of Indian Academy of Neurology 2009 12 4 296 306 10.4103/0972-2327.58273 20182578
4. Treatment options for multiple sclerosis: current and emerging therapies. Gawronski KM, Rainka MM, Patel MJ, Gengo FM, Pharmacotherapy 2010 30 9 916 927 10.1592/phco.30.9.916 20795847
5. The Danish quality model. Hundborg K, Ugeskrift for laeger 2009 171 20 1660 1663 19454203
6. Multidisciplinary rehabilitation for adults with multiple sclerosis. Khan F, Turner-Stokes L, Ng L, Kilpatrick T, Cochrane Database Syst Rev 2007 2 D006036
7. Exercise therapy for multiple sclerosis. Rietberg MB, Brooks D, Uitdehaag BM, Kwakkel G, Cochrane Database Syst Rev 2005 1 D003980
8. Sorensen J, Analysis of quality of life assessed by "Functional Assessment in Multiple Sclerosis" (FAMS) among individuals who have participated in individualzed rehabilitation at the Sclerosis Hospitals at Ry and Haslev] in Danish Odense, Denmark: University of Southern Denmark 2010 23076957
9. Improving the reporting of pragmatic trials: an extension of the CONSORT statement. Zwarenstein M, Treweek S, Gagnier JJ, Altman DG, Tunis S, Haynes B, Oxman AD, Moher D, group C, Pragmatic Trials in Healthcare g, BMJ 2008 337 2390 10.1136/bmj.a2390 19001484
10. Developing and evaluating complex interventions: the new Medical Research Council guidance. Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M, Medical Research Council G, BMJ 2008 337 1655 10.1136/bmj.a1655 18824488
11. Rating neurologic impairment in multiple sclerosis: an expanded disability status scale (EDSS). Kurtzke JF, Neurology 1983 33 11 1444 1452 10.1212/WNL.33.11.1444 6685237 (Pubitemid 14237132)
12. The Barthel ADL Index: a reliability study. Collin C, Wade DT, Davies S, Horne V, Int Disability Stud 1988 10 2 61 63 10.3109/09638288809164103
13. The Barthel ADL Index: a standard measure of physical disability? Wade DT, Collin C, Int Disability Stud 1988 10 2 64 67 10.3109/09638288809164105
14. [Barthel Index for evaluation of function: a Danish consensus on its use]. Maribo T, Lauritsen JM, Waehrens E, Poulsen I, Hesselbo B, Ugeskrift for laeger 2006 168 34 2790 2792 16942697
15. A systematic investigation of depression. Beck AT, Compr Psychiatry 1961 2 163 170 10.1016/S0010-440X(61)80020-5 13866251
16. Validation of the functional assessment of multiple sclerosis quality of life instrument. Cella DF, Dineen K, Arnason B, Reder A, Webster KA, Karabatsos G, Chang C, Lloyd S, Steward J, Stefoski D, Neurology 1996 47 1 129 139 10.1212/WNL.47.1.129 8710066 (Pubitemid 26243873)
17. Measure Yourself Concerns and Wellbeing (MYCaW): an individualised questionnaire for evaluating outcome in cancer support care that includes complementary therapies. Paterson C, Thomas K, Manasse A, Cooke H, Peace G, Complementary Therapies Med 2007 15 1 38 45 10.1016/j.ctim.2006.03.006 (Pubitemid 46359915)
18. Centre for Applied Health Services Research and Technology Assessment report series. Vindeløv PKLA, Boesen F, Sorensen J, Danish pilot test of MYCaW: Pilot testing of the instrument MYCaW. In connection with the rehabilitation of the Danish Multiple Sclerosis Hospitals Odense, Denmark: University of Southern Denmark 2011
19. The Canadian occupational performance measure: an outcome measure for occupational therapy. Law M, Baptiste S, McColl M, Opzoomer A, Polatajko H, Pollock N, Canadian J Occup Therapy Revue canadienne d'ergotherapie 1990 57 2 82 87
20. Pilot testing of the Canadian Occupational Performance Measure: clinical and measurement issues. Law M, Polatajko H, Pollock N, McColl MA, Carswell A, Baptiste S, Canadian J Occup Therapy Revue canadienne d'ergotherapie 1994 61 4 191 197 (Pubitemid 24333533)
21. Validity and community utility of the Canadian Occupational Performance Measure. McColl MA, Paterson M, Davies D, Doubt L, Law M, Canadian J Occup Therapy Revue canadienne d'ergotherapie 2000 67 1 22 30
22. Utility of the Canadian Occupational Performance Measure as an admission and outcome measure in interdisciplinary community-based geriatric rehabilitation. Enemark Larsen A, Carlsson G, Scand J Occup Ther 2012 19 2 204 213 10.3109/11038128.2011.574151 21631172
23. International classification of functioning, disability and health: an introduction and discussion of its potential impact on rehabilitation services and research. Dahl TH, J Rehabilitation Med: Official J UEMS European Board of Physical and Rehabilitation Medicine 2002 34 5 201 204
24. The Multiple Sclerosis Impact Scale (MSIS-29): a new patient-based outcome measure. Hobart J, Lamping D, Fitzpatrick R, Riazi A, Thompson A, Brain: J Neurology 2001 124 Pt 5 962 973 (Pubitemid 32458508)
25. Multiple Sclerosis Impact Scale (MSIS-29): reliability and validity in hospital based samples. Riazi A, Hobart JC, Lamping DL, Fitzpatrick R, Thompson AJ, J Neurol Neurosurg Psychiatry 2002 73 6 701 704 10.1136/jnnp.73.6.701 12438473 (Pubitemid 35448855)
26. Validation of the Danish version of functional assessment of multiple sclerosis: a quality of life instrument. Sorensen J, Bay J, Damsgaard T, Heeley E, Rostgaard I, Lovendahl B, Boesen F, Multiple Sclerosis Int 2011 2011 121530
27. The Health Education Impact Questionnaire (heiQ): an outcomes and evaluation measure for patient education and self-management interventions for people with chronic conditions. Osborne RH, Elsworth GR, Whitfield K, Patient Edu Counseling 2007 66 2 192 201 10.1016/j.pec.2006.12.002 (Pubitemid 46575176)
28. a new facility for the measurement of health-related quality of life. The EuroQol Group. EuroQol, Health Policy 1990 16 3 199 208 10109801
29. EuroQoL: a generic measure for health status. Gudex C, Sørensen J, Månedsskr Prakt Lægegern 1998 76 October 1339 1345 23077721
30. Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Herdman M, Gudex C, Lloyd A, Janssen M, Kind P, Parkin D, Bonsel G, Badia X, Qual Life Res 2011 20 10 1727 1736 10.1007/s11136-011-9903-x 21479777
31. The 15D instrument of health-related quality of life: properties and applications. Sintonen H, Ann Med 2001 33 5 328 336 10.3109/07853890109002086 11491191 (Pubitemid 32675373)
32. The fatigue severity scale. Application to patients with multiple sclerosis and systemic lupus erythematosus. Krupp LB, LaRocca NG, Muir-Nash J, Steinberg AD, Arch Neurol 1989 46 10 1121 1123 10.1001/archneur.1989. 00520460115022 2803071 (Pubitemid 19246303)
33. Evaluation of the Modified Fatigue Impact Scale in four different European countries. Kos D, Kerckhofs E, Carrea I, Verza R, Ramos M, Jansa J, Mult Scler 2005 11 1 76 80 10.1191/1352458505ms1117oa 15732270 (Pubitemid 40259978)
34. A new method for measuring daytime sleepiness: the Epworth sleepiness scale. Johns MW, Sleep 1991 14 6 540 545 1798888
35. Evaluating sleep quality in older adults: the Pittsburgh Sleep Quality Index can be used to detect sleep disturbances or deficits. Smyth CA, Am J Nurs 2008 108 5 42 50 quiz 50-41 10.1097/01.NAJ.0000317300.33599.63 18434798
36. Test-retest reliability and validity of the Pittsburgh Sleep Quality Index in primary insomnia. Backhaus J, Junghanns K, Broocks A, Riemann D, Hohagen F, J Psychosom Res 2002 53 3 737 740 10.1016/S0022-3999(02)00330-6 12217446
37. The Pittsburgh Sleep Quality Index (PSQI). Smyth C, J Gerontol Nurs 1999 25 12 10 11 10776148
38. The Pittsburgh Sleep Quality Index: a new instrument for psychiatric practice and research. Buysse DJ, Reynolds CF 3rd, Monk TH, Berman SR, Kupfer DJ, Psychiatry research 1989 28 2 193 213 10.1016/0165-1781(89)90047-4 2748771 (Pubitemid 19144991)
39. A qualitative systematic overview of the measurement properties of functional walk tests used in the cardiorespiratory domain. Solway S, Brooks D, Lacasse Y, Thomas S, Chest 2001 119 1 256 270 10.1378/chest.119.1.256 11157613 (Pubitemid 32150576)
40. ATS statement on six-minute walk test. Brooks D, Solway S, Gibbons WJ, Am J Respir Crit Care Med 2003 167 9 1287 12714345
41. ATS statement: guidelines for the six-minute walk test. Laboratories ATSCoPSfCPF, Am J Respir Crit Care Med 2002 166 1 111 117 12091180
42. Measuring the impact of MS on walking ability: the 12-Item MS Walking Scale (MSWS-12). Hobart JC, Riazi A, Lamping DL, Fitzpatrick R, Thompson AJ, Neurology 2003 60 1 31 36 10.1212/WNL.60.1.31 12525714 (Pubitemid 36070640)
43. Confirming the validity and responsiveness of the Multiple Sclerosis Walking Scale-12 (MSWS-12). McGuigan C, Hutchinson M, Neurology 2004 62 11 2103 2105 10.1212/01.WNL.0000127604.84575.0D 15184625 (Pubitemid 38738232)
44. Psychometric performance of a generic walking scale (Walk-12G) in multiple sclerosis and Parkinson's disease. Bladh S, Nilsson MH, Hariz GM, Westergren A, Hobart J, Hagell P, J Neurol 2012 259 4 729 738 10.1007/s00415-011-6254-z 21956376
45. Longitudinal measurement invariance of the Multiple Sclerosis Walking Scale-12. Motl RW, McAuley E, Mullen S, J Neurol Sci 2011 305 1-2 75 79 21474149
46. Reliability of the Dynamic Gait Index in individuals with multiple sclerosis. McConvey J, Bennett SE, Archives Physical Med Rehabilitation 2005 86 1 130 133 10.1016/j.apmr.2003.11.033 (Pubitemid 40082122)
47. Reliability of the Dynamic Gait Index (Finnish version) in individuals with neurological disorders. Tuomela J, Paltamaa J, Hakkinen A, Disabil Rehabil 2012 34 19 1657 1664 10.3109/09638288.2012.660602 22394029
48. Clinical measurement of sit-to-stand performance in people with balance disorders: validity of data for the Five-Times-Sit-to-Stand Test. Whitney SL, Wrisley DM, Marchetti GF, Gee MA, Redfern MS, Furman JM, Phys Ther 2005 85 10 1034 1045 16180952 (Pubitemid 41396003)
49. Five times sit-to-stand test performance in Parkinson's disease. Duncan RP, Leddy AL, Earhart GM, Archives of physical medicine and rehabilitation 2011 92 9 1431 1436 10.1016/j.apmr.2011.04.008 21878213
50. Adult norms for the Box and Block Test of manual dexterity. Mathiowetz V, Volland G, Kashman N, Weber K, The American J Occup Therapy: official publication of the American Occupational Therapy Association 1985 39 6 386 391 10.5014/ajot.39.6.386
51. Clinical impact of 20% worsening on Timed 25-foot Walk and 9-hole Peg Test in multiple sclerosis. Kragt JJ, van der Linden FA, Nielsen JM, Uitdehaag BM, Polman CH, Mult Scler 2006 12 5 594 598 10.1177/1352458506070768 17086905 (Pubitemid 46940633)
52. The 9-hole PEG test of upper extremity function: average values, test-retest reliability, and factors contributing to performance in people with Parkinson disease. Earhart GM, Cavanaugh JT, Ellis T, Ford MP, Foreman KB, Dibble L, J Neurologic Physical Therapy: JNPT 2011 35 4 157 163
53. Validation of the "Six Step Spot Test" for gait among patients with multiple sclerosis in Brazil. Pavan K, Tilbery CP, Lianza S, Marangoni BE, Arq Neuropsiquiatr 2010 68 2 198 204 10.1590/S0004-282X2010000200009 20464285
54. The six spot step test: a new measurement for walking ability in multiple sclerosis. Nieuwenhuis MM, Van Tongeren H, Sorensen PS, Ravnborg M, Mult Scler 2006 12 4 495 500 10.1191/1352458506ms1293oa 16900764 (Pubitemid 44132591)
55. Measuring self-efficacy in people with multiple sclerosis: a validation study. Schwartz CE, Coulthard-Morris L, Zeng Q, Retzlaff P, Archives Physical Med Rehabilitation 1996 77 4 394 398 10.1016/S0003-9993(96)90091-X (Pubitemid 26111758)
56. Development and validation of a self-efficacy measure for people with multiple sclerosis: the Multiple Sclerosis Self-efficacy Scale. Rigby SA, Domenech C, Thornton EW, Tedman S, Young CA, Mult Scler 2003 9 1 73 81 10.1191/1352458503ms870oa 12617272 (Pubitemid 36253700)
57. Measuring the impact of multiple sclerosis on psychosocial functioning: the development of a new self-efficacy scale. Airlie J, Baker GA, Smith SJ, Young CA, Clin Rehabil 2001 15 3 259 265 10.1191/026921501668362643 11386395 (Pubitemid 32471883)
58. Development of the Depression Coping Self-Efficacy Scale (DCSES). Perraud S, Arch Psychiatr Nurs 2000 14 6 276 284 10.1053/apnu.2000.19090 11144415
59. Validity of the depression coping self-efficacy scale. Tucker S, Brust S, Richardson B, Arch Psychiatr Nurs 2002 16 3 125 133 10.1053/apnu.2002.32949 12037798 (Pubitemid 40433140)
60. A validity and reliability study of the coping self-efficacy scale. Chesney MA, Neilands TB, Chambers DB, Taylor JM, Folkman S, Br J Heal Psychol 2006 11 Pt 3 421 437 (Pubitemid 44342742)
61. Functional evaluation: the Barthel Index. Mahoney FI, Barthel DW, Maryland State Medical J 1965 14 61 65
62. The Assessment of Motor and Process Skills of persons with psychiatric disorders. Pan AW, Fisher AG, The American J Occup Therapy: official publication of the American Occupational Therapy Association 1994 48 9 775 780 10.5014/ajot.48.9.775
63. Validity of using the Assessment of Motor and Process Skills to estimate overall home safety in persons with psychiatric conditions. McNulty MC, Fisher AG, The American J Occup Therapy: official publication of the American Occupational Therapy Association 2001 55 6 649 655 10.5014/ajot.55.6.649 (Pubitemid 33602585)
64. Effect of time of day on walking capacity and self-reported fatigue in persons with multiple sclerosis: a multi-center trial. Feys P, Gijbels D, Romberg A, Santoyo C, Gebara B, de Noordhout BM, Knuts K, Bethoux F, de Groot V, Vaney C, et al. Mult Scler 2012 18 3 351 357 10.1177/1352458511419881 21969239