Measuring Patient-Centered Outcomes in Neurologic Disease: Extending the Q-Twist Method

Archives of Neurology

Volumn 52, Issue 8, 1995, Pages 754-762

  Schwartz, Carolyn E ^a   Cole, Bernard F ^b   Gelber, Richard D ^c  

^a Rocky Mountain MS Center   (United States)

^b BROWN UNIVERSITY   (United States)

^c HARVARD MEDICAL SCHOOL   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

BACLOFEN; CYCLOPHOSPHAMIDE; INTERFERON BETA SERINE; METHYLPREDNISOLONE;

ARTICLE; ATAXIA; CLINICAL PROTOCOL; CLINICAL TRIAL; COGNITIVE DEFECT; COST; DISABILITY; FATIGUE; FUNCTIONAL ASSESSMENT; GASTROINTESTINAL SYMPTOM; HUMAN; MEDICAL DECISION MAKING; MULTIPLE SCLEROSIS; OSTEOPOROSIS; PATIENT CARE; PATIENT SATISFACTION; PRIORITY JOURNAL; PRODUCTIVITY; QUALITY OF LIFE; SPASTICITY; TREATMENT OUTCOME;

CLINICAL TRIALS; HUMAN; INTERFERON-BETA; MULTIPLE SCLEROSIS; NERVOUS SYSTEM DISEASES; PATIENTS; QUALITY OF LIFE; SELF CARE; SUPPORT, NON-U.S. GOV'T;

EID: 0029131208     PISSN: 00039942     EISSN: 15383687     Source Type: Journal    
DOI: 10.1001/archneur.1995.00540320026010     Document Type: Article

References (60)

1. Moss R. Toward the golden city. Agni. 1992;35:111.
2. Bauer C. From the patient's point of view. J Cogn Rehabil. 1992;10:9.
3. Fisk JD, Pontefract A, Ritvo P, Archibald CJ, Murray TJ. The impact of fatigue on patients with multiple sclerosis. Can J Neurol Sci. 1994;18(suppl 1):79-83.
4. Noseworthy JH. Therapeutics of multiple sclerosis. Clin Neuropharmacol. 1991; 14:49-61.
5. Schumacher GA, Beebe G, Kibler RF, et al. Problems of experimental trials of therapy in multiple sclerosis: report by the Panel on the Evaluation of Experimental Trials of Therapy in Multiple Sclerosis. Ann N Y Acad Sci. 1965;122: 552-568.
6. Poser S. Management of patients with multiple sclerosis. In: Koestler JC, ed. Handbook of Clinical Neurology: Demyelinating Diseases. New York, NY: Elsevier Science Publishing Co Inc; 1985;3:147-186.
7. Trotter JL, Garvey WF. Prolonged effects of large-dose methylprednisolone infusion in multiple sclerosis. Neurology. 1980;30:702-708.
8. Lechtenberg R. Multiple Sclerosis Fact Book. Philadelphia, Pa: FA Davis Co Publishers; 1988.
9. Gelber RD, Goldhirsch A. A new endpoint for the assessment of adjuvant therapy in postmenopausal women with operable breast cancer. J Clin Oncol. 1986; 4:1772-1779.
10. Goldhirsch A, Gelber RD, Simes J, Glasziou P, Coates AS, for the Ludwig Breast Cancer Study Group. Costs and benefits of adjuvant therapy in breast cancer: a quality-adjusted survival analysis. J Clin Oncol. 1989;7:36-44.
11. Penn RD, Savoy SM, Corcos D, et al. Intrathecal baclofen for severe spinal spasticity. N Engl J Med. 1989;320:1517-1521.
12. Cohen RA, Fisher M. Amantadine treatment of fatigue associated with multiple sclerosis. Can J Neurol Sci. 1989;14:273-278.
13. Blaivas JG, Holland NJ, Geisser B, LaRocca N, Madonna M, Scheinberg L. Multiple sclerosis bladder: studies and care. Ann N Y Acad Sci. 1984;436:328-345.
14. Broman T. Management of patients with multiple sclerosis. In: Vinken PJ, Bruyn GW, eds. Handbook of Clinical Neurology, IX. New York, NY: Elsevier Science Publishing Co Inc; 1970:408-425.
15. Allshouse KD. Treating patients as individuals. In: Gerteis M, Edgman-Levitan S, Daley J, Delbanco TL, eds. Through the Patient's Eyes. San Francisco, Calif: Jossey-Bass Inc Publishers; 1993:19-44.
16. The Canadian Cooperative Multiple Sclerosis Study Group. The Canadian cooperative trial of cyclophosphamide and plasma exchange in progressive multiple sclerosis. Lancet. 1991;337:441-446.
17. Hauser SL, Dawson DM, Lehrich JR, et al. Intensive immunosuppression in progressive multiple sclerosis: a randomized, three-arm study of high-dose intravenous cyclophosphamide, plasma exchange, and ACTH. N Engl J Med. 1983;308:173-180.
18. Noseworthy JH, Vandervoot MK, Ebers GC, and the Canadian Cooperative Multiple Sclerosis Study Group. Acceptance of placebo-controlled trial design by progressive multiple sclerosis patients. Neurology. 1989;39:606-607.
19. Leo GJ, Rao SM. Effects of intravenous physostigmine and lecithin on memory loss in multiple sclerosis: report of a pilot study. J Neurol Rehabil. 1988;2: 123-129.
20. LaRocca NG. A rehabilitation perspective. In: Rao SM, ed. Neurobehavioral Aspects of Multiple Sclerosis. New York, NY: Oxford University Press Inc; 1990: 215-229.
21. Sullivan MJL, Dehoux E, Buchanan DC. An approach to cognitive rehabilitation in multiple sclerosis. Can J Rehabil. 1989;3:77-85.
22. Rao SM, Leo, GJ, Ellington LS, Nauertz T, Bernardin L, Unverzagt F. Cognitive dysfunction in multiple sclerosis, II: impact on employment and social functioning. Neurology. 1991;41:692-696.
23. Foley FW, Iverson J. Sexuality in multiple sclerosis. In: Kalb R, ed. The Family and Multiple Sclerosis. New York, NY: Demos Publications; 1992:63-82.
24. Rao SM, Leo GJ, Bernardin L, Unverzagt F. Cognitive dysfunction in multiple sclerosis, I: frequency, patterns, and prediction. Neurology. 1991;41:685-691.
25. Schwartz CE. Awareness and cognitive deficit in multiple sclerosis. Psychosom Med. 1993;55:130. Abstract.
26. Kurtzke JF. On the evaluation of disability in multiple sclerosis. Neurology. 1961; 11:686-694.
27. Kurtzke JF. Further notes on disability evaluation in multiple with scale modifications. Neurology. 1965;15:654-661.
28. Kurtzke JF. Rating neurologic impairment in multiple sclerosis: an Expanded Disability Status Scale (EDSS). Neurology. 1983;33:1444-1452.
29. Kurtzke JF. Neuroepidemiology, II: assessment of therapeutic trials. Ann Neurol. 1986;19:311-319.
30. Pia Amato M, Fratiglioni L, Groppi C, Siracusa G, Amaducci L. Interrater reliability in assessing functional systems and disability on the Kurtzke scale in multiple sclerosis. Arch Neurol. 1988;45:746-748.
31. Noseworthy JH, Vandervoort MK, Wong CJ, Ebers GC, and the Canadian Cooperative MS Study Group. Interrater variability with the Expanded Disability Status Scale (EDSS) and Functional Systems (FS) in a multiple sclerosis clinical trial. Neurology. 1990;40:971-975.
32. Kurtzke JF. Disability rating scales in multiple sclerosis. Ann N Y Acad Sci. 1984;436:347-360.
33. The IFNB Multiple Sclerosis Study Group. Interferon beta-1b is effective in relapsing-remitting multiple sclerosis, I: clinical results of a multicenter, randomized, double-blind, placebo-controlled trial. Neurology. 1993;43:655-661.
34. Paty DW, Li DKB, the UBC MS/MRI Study Group, and the IFNB Multiple Sclerosis Study Group. Interferon beta-1 b is effective in relapsing-remitting multiple sclerosis, II: MRI analysis results of a multicenter, randomized, doubleblind, placebo-controlled trial. Neurology. 1993;43:662-667.
35. Tyler LE. Tests and Measurements. 2nd ed. Englewood Cliffs, NJ: Prentice-Hall International Inc; 1971:6.
36. Hohol MJ, Khoury SJ, Hafler DA, et al. Disease Steps in multiple sclerosis: a simple approach to classify patients and evaluate disease progression. Neurology. 1993;43:A203-A204.
37. Gelber RD, Lenderking WR, Cotton DJ, et al. Quality-of-life evaluation in a clinical trial of zidovudine therapy in patients with mildly symptomatic HIV infection. Ann Intern Med. 1992;116:961-966.
38. Gelber RD, Cole BF, Goldhirsch A. Comparing treatments using qualityadjusted survival: the Q-TWiST method. Am Stat. In press.
39. Cole BF, Gelber RD, Anderson KM. Parametric approaches to quality-adjusted survival analysis. Biometrics. 1994;50:621-631.
40. Glasziou PP, Simes RJ, Gelber RD. Quality-adjusted survival analysis. Stat Med. 1990;9:1259-1276.
41. Guyatt GH, Jaeschke R. Measurements in clinical trials: choosing the appropriate approach. In: Spilker B, ed. Quality of Life Assessments in Clinical Trials. New York, NY: Raven Press; 1990:37-46.
42. Nunnally JC. Psychometric Theory. 2nd ed. New York, NY: McGraw-Hill International Book Co; 1978:210-214.
43. Torrance GW, Thomas WH, Sackett DL. A utility maximization model for evaluation of health care programs. Health Serv Res. 1972;7;118-1133.
44. von Neumann J, Morgenstern O. The Theory of Games and Economic Behavior. New York, NY: John Wiley & Sons Inc; 1953.
45. Torrance GW, Boyle MH, Horwood SP. Application of multi-attribute utility theory to measure social preferences for health states. Operations Res. 1982;30: 1043-1069.
46. Rudick RA. Betaseron for multiple sclerosis: implications for therapeutics. Arch Neurol. 1994;51:125-127.
47. Burnham JA, Wright R, Dreisbach J, Murray RS. The effect of high-dose steroids on MRI gadolinium enhancement in acute demyelinating lesions. Neurology. 1991;41:1349-1354.
48. Poser CM. A numerical scoring system for the classification of multiple sclerosis. Acta Neurol Scand. 1979;60:100-111.
49. Radloff L. The CES-D scale: a self-report depression scale for research in the general population. Appl Psychol Measurement. 1977;1:385-401.
50. Coyle CP, Roberge JJ. The psychometric properties of the Center for Epidemiologic Studies—Depression Scale (CES-D) when used with adults with physical disabilities. Psychol Health. 1993;7:69-81.
51. Weiss W, Dambrosia JM. Common problems in designing therapeutic trials in multiple sclerosis. Arch Neurol. 1983;40:678-680.
52. Krupp LB, Alvarez LA, LaRocca NG, Scheinberg LC. Fatigue in multiple sclerosis. Arch Neurol. 1988;45:435-437.
53. Frankl DI. Multiple sclerosis. In: Umphred D, ed. Neurological Rehabilitation. 2nd ed. St Louis, Mo: Mosby—Year Book Inc; 1990:531-549.
54. Weiner HL, Mackin GA, Matsui M, et al. Double-blind pilot trial of oral tolerization with myelin antigens in multiple sclerosis. Science. 1993;259:1321-1324.
55. Bourdette DN, Prochazka AV, Mitchell W, Licari P, Burks J, and the VA Multiple Sclerosis Rehabilitation Study Group. Health care costs of veterans with multiple sclerosis: implications for the rehabilitation of MS. Arch Phys Med Rehabil. 1993;74:26-31.
56. Data Management Service of the Uniform Data System for Medical Rehabilitation and the Center for Functional Assessment Research. Guide for the Use of the Uniform Data Set for Medical Rehabilitation. Buffalo, NY: State University of New York at Buffalo; March 1990.
57. Scheinberg LC, Feldman J, Ratzker P, et al. Self-assessment of neurological impairment in multiple sclerosis. Neurology. 1986;36(suppl 1):284. Abstract.
58. Bijlsma JWJ, Huiskes CJAE, Kraaimaat FW, Vanderveen MJ, Huber-Bruning O. Relation between patients’ own health assessment and clinical and laboratory findings in rheumatoid arthritis. J Rheumatol. 1991;18:650-653.
59. Lewinsohn PMW, Chaplin W, Barton R. Social competence and depression: the role of illusory self-perceptions. J Abnorm Psychol. 1980;89:203-212.
60. Schwartz CE, Cole BF, Vickrey B, Gelber RD. The Q-TWiST approach to assessing health-related quality of life in epilepsy. Qual Life Res. In press.