Role of health-related quality of life measures in the routine care of people with multiple sclerosis

Health and Quality of Life Outcomes

Volumn 3, Issue , 2005, Pages

  Solari, Alessandra ^a  

^a DEPARTMENT OF NEUROSURGERY   (Italy)

Author keywords

Clinical practice; Health related quality of life; Multiple sclerosis; Outcomes assessment

Indexed keywords

ARTICLE; CLINICAL PRACTICE; CLINICAL STUDY; CONSENSUS; CULTURAL FACTOR; DOCTOR PATIENT RELATION; HUMAN; INFORMATION PROCESSING; MEDICAL ASSESSMENT; MEDICAL DECISION MAKING; METHODOLOGY; MULTIPLE SCLEROSIS; PATIENT CARE; PHYSICIAN; PREVALENCE; QUALITY OF LIFE; RESOURCE ALLOCATION; DECISION MAKING; INSTRUMENTATION; OUTCOME ASSESSMENT; PATHOPHYSIOLOGY; PSYCHOLOGICAL ASPECT; PSYCHOMETRY; QUESTIONNAIRE; REVIEW; SICKNESS IMPACT PROFILE;

DECISION MAKING; HUMANS; MULTIPLE SCLEROSIS; OUTCOME ASSESSMENT (HEALTH CARE); PSYCHOMETRICS; QUALITY OF LIFE; QUESTIONNAIRES; SICKNESS IMPACT PROFILE;

EID: 16344394548     PISSN: 14777525     EISSN: None     Source Type: Journal    
DOI: 10.1186/1477-7525-3-16     Document Type: Article

References (50)

1. Compston A: Genetic epidemiology of multiple sclerosis. J Neurol Neurosurg Psychiatry 1997, 62:553-561.
2. Kurtzke JF: Geography in multiple sclerosis. J Neurol 1977, 215:1-26.
3. Sadovnick AD, Ebers GC: Epidemiology of multiple sclerosis: a critical overview. Can J Neurol Sci 1993, 20: 7-29.
4. Pittock SJ, McClelland RL, Mayr WT, Jorgesten NW, Weinshenker BG, Noseworthy J, Rodriguez M: Clinical implications of benign multiple sclerosis: A 20-year population-based follow-up study. Ann Neurol 2004, 56: 303-306.
5. Filippini G, Munari L, Incorvaia B: Interferons in relapsing remitting multiple sclerosis: a systematic review. Lancet 2003, 361:545-552.
6. Kurtzke JF: Rating neurologic impairment in multiple sclerosis: an expanded disability status scale. Neurology 1983, 33:1444-1452.
7. Rothwell PM, McDowell Z, Wong CK, Dorman PJ: Doctors and patients don't agree: cross sectional study of patients and doctors perceptions and assessments of disability in multiple sclerosis. BMJ 1997, 314:1580-1583.
8. Aronson KJ: Quality of life among persons with multiple sclerosis and their caregivers. Neurology 1997, 48:74-80.
9. Brunet DG, Hopman WM, Singer MA, Edgar CM, MacKenzie TA: Measurement of health-related quality of life in multiple sclerosis patients. Can J Neurol Sci 1996, 23:99-103.
10. Burden of illness of multiple sclerosis: Part II: Quality of life. The Canadian Burden of Illness Study Group. Can J Neurol Sci 1998, 25:31-38.
11. Pfennings LEMA, Cohen L, Van der Ploeg HM: Assessing the quality of life in patients with multiple sclerosis. In Multiple sclerosis: clinical changes and controversies Edited by: Thompson AJ, Polman C, Hohlfeld R. London: Martin Dunitz; 1997.
12. Lintern TC, Beaumont G, Kenealy PM, Murrell RC: Quality of life (QoL) in severely disabled multiple sclerosis patients: Comparison of three QoL measures using multidimensional scaling. Qual Life Res 2001, 10:371-378.
13. Vickrey BG, Hays RD, Harooni R, Myers LW, Ellison GW: A health-related quality of life measure for multiple sclerosis. Qual Life Res 1995, 4:187-206.
14. Cella DF, Dineen MA, Arnason B, Reder A, Webster KA, Karabatsos G, Chang C, Lloyd S, Steward J, Stefoski D: Validation of the Functional Assessment of Multiple Sclerosis quality of life instrument. Neurology 1996, 47:129-139.
15. Fischer JS, LaRocca NG, Miller DM, Ritvo PG, Andrews H, Paty D: Recent developments in the assessment of quality of life in multiple sclerosis (MS). Mult Scler 1999, 5:251-259.
16. Rotstein Z, Barak Y, Noy S, Achiron A: Quality of life in multiple sclerosis: development and validation of the "RAYS" scale and comparison with the SF-36. Int J Qual Health Care 2000, 12: 11-517.
17. Gold SM, Heesen C, Schulz H, Guder U, Monch A, Gbadamosi J, Buhmann C, Schulz KH: Disease-specific quality of life instruments in multiple sclerosis: validation of the Hamburg Quality of Life Questionnaire in multiple sclerosis (HAQUAMS). Mult Scler 2001, 7:119-130.
18. Hobart JC, Lamping DL, Fitzpatrick R, Riazi A, Thompson A: The Multiple Sclerosis Impact Scale (MSIS-29): a new patient-based outcome measure. Brain 2001, 124: 962-973.
19. Ford HL, Gerry E, Tennant A, Whalley D, Haigh R, Johnson MH: Developing a disease-specific quality of life measure for people with multiple sclerosis. Clin Rehabil 2001, 15:247-258.
20. Solari A, Filippini G, Mendozzi L, Grezzi A, Cifani S, Barbieri E, Baldini S, Salmeggi A, LaMantia L, Farinotti M, Caputo D, Mosconi P: Validation of Italian multiple sclerosis quality of life 54 questionnaire. J Neurol Neurosurg Psychiatry 1999, 67: 58-162.
21. Vernay D, Gerbaud L, Biolay S, Coste J, Debourse J, Aufauvre D, Beneton C, Colamarino R, Glandier PY, Dordain G, Clavelou P: Quality of life and multiple sclerosis: validation of the French version of the self-questionnaire (SEP-59). Rev Neur 2000, 156: 47-263.
22. Acquadro C, Lafortune L, Mear I: Quality of life in multiple sclerosis: translation in French Canadian of the MSQoL-54. Health Qual Life Outcomes 2003, 1:70.
23. Yamamoto T, Ogata K, Katagishi M, Shimizu H, Ogawa M, Yamamura T, Kawai M: Validation of the Japanese-translated version Multiple Sclerosis Quality of Life-54 instrument. Rinsho Shinkeigaku 2004, 44:417-421.
24. Mendes MF, Balsimelli S, Stangehaus G, Tilbery CP: Validation of the functional assessment of multiple sclerosis quality of life instrument in a Portuguese language. Arq Neuropsiquiatr 2004, 62:108-113.
25. Lincoln NB, Dent A, Harding J, Weyman N, Nicholl C, Blumhardt LD, Playford ED: Evaluation of cognitive assessment and cognitive intervention for people with multiple sclerosis. J Neurol Neurosurg Psychiatry 2002, 72:93-98.
26. Solari A, Motta A, Mendozzi L, Pucci E, Forni M, Mancardi G, Pozzilli C: Computer-aided retraining of memory and attention in people with multiple sclerosis: a randomized, double-blind controlled trial. J Neurol Sci 2004, 222:99-104.
27. Cohen JA, Cutter GR, Fischer JS, Goodman AD, Heidenreich FR, Kooijmans MF, Sandrock AW, Rudick RA, Simon JH, Simonian NA, Tsao EC, Whitaker JN: Benefit of interferon β-1a on MSFC progression in secondary progressive MS. Neurology 2002, 59:679-687.
28. Schulz KH, Gold SM, Witte J, Bartsch K, Lang UE, Hellweg R, Reer R, Braumann KM, Heesen C: Impact of aerobic training on immune-endocrine parameters, neutrophic factors, quality of life and coordinative function in multiple sclerosis. J Neurol Sci 2004, 225:11-18.
29. Lobentanz IS, Asenbaum S, Vass K, Sauter C, Klösch G, Kollegger H, Kristoferitsch W, Zeitlhofer J: Factors influencing quality of life in multiple sclerosis patients: disability, depressive mood, fatigue and sleep quality. Acta Neurol Scand 2004, 110:6-13.
30. Solari A, Radice D: Health status of people with multiple sclerosis: a community mail survey. Neurol Sci 2001, 22: 07-315.
31. Henriksson F, Fredrikson S, Masterman T, Jönsson: Costs, quality of life and disease severity in multiple sclerosis: a cross-sectional study in Sweden. Eur J Neurol 2001, 8: 7-35.
32. Amato MP, Ponziani G, Rossi F, Liedl CL, Stefanile C, Rossi L: Quality of life in multiple sclerosis: the impact of depression, fatigue, and disability. Mult Scler 2001, 7:340-344.
33. Wang JL, Reimer MA, Metz LM, Patten SB: Major depression and quality of life in individuals with multiple sclerosis. Int J Psychiatry Med 2000, 30:309-317.
34. Grønning M, Hannisdal E, Mellgren SI: Multivariate analyses of factors associated with unemployment in people with multiple sclerosis. J Neurol Neurosurg Psychiatry 1990, 53:388-390.
35. Ford HL, Gerry E, Johnson MH, Tennant A: Health status and quality of life measure of people with multiple sclerosis. Disabil Rehabil 2001, 23:516-521.
36. Vickrey BG: Getting oriented to patient-oriented outcomes. Neurology 1999, 53:662-663.
37. Note for guidance on clinical investigation of medicinal products for the treatment of multiple sclerosis [http://www.emea.eu.int/pdfs/human/ewp/056198en.pdf]. last accessed March 2005
38. Moher D, Schulz KF, Altman DG: The CONSORT statement: revised recommendations for improving the quality of reports of parallel-group randomised trials. Lancet 2001, 357: 191-1194.
39. Moore F, Wolfson C, Alexandrov L, Lapierre Y: Do general and multiple sclerosis- specific quality of life instruments differ? Can J Neurol Sci 2004, 31:64-71.
40. Deyo RA, Patrick DL: Barriers to the use of health status measures in clinical investigation, patient care, and policy research. Med Care 1989, 27:S252-S268.
41. McHorney CA, Taylor AR: Individual-patient monitoring in clinical practice: are available health status surveys adequate? Qual Life Res 1995, 4:293-307.
42. Rubenstein LV, McCoy JM, Cope DW, Barrett PA, Hirsch SH, Messer KS, Young RT: Improving patient quality of life with feedback to physicians about functional status. J Gen Intern Med 1995, 10:607-614.
43. Nelson EC, Landgraf JM, Hays RD, Wasson JH, Kirk JW: The functional status of patients: how can it be measured in physician's offices? Med Care 1990, 28:1111-1126.
44. Somerset M, Campbell R, Sharp DJ, Peters T: What do people with MS want and expect from health-care services? Health Expectations 2001, 4:29-37.
45. Kazis LE, Callahan LF, Meenan RF, Pincus TSO: Health status reports in the care of patients with rheumatoid arthritis. J Clin Epidemiol 1990, 43:1243-1253.
46. Wagner AK, Ehrenberg BL, Tran TA, Bungay KM, Cynn DJ, Rogers WH: Patient-based health status measurement in clinical practice: a study of its impact on epilepsy patients' care. Qual Life Res 1997, 6:329-341.
47. Gilbody SM, House AO, Sheldon TA: Psychiatrists in the UK do not use outcomes measures. National survey. Br J Psychiatry 2002, 180:101-103.
48. Lee SJ, Joffe S, Kim HT, Socie G, Gilman AL, Wingard JR, Horowitz MM, Cella D, Syrjala KL: Physicians' attitudes about quality of life issues in haematopoietic stem cell transplantation. Blood 2004, 104:2194-2200.
49. Donaldson MS: Tacking stock of health-related quality-of-life measurement in oncology practice in the United States. J Natl Cancer Inst Monogr 2004, 33:155-167.
50. Fitzpatrick R, Fletcher A, Gore S, Jones D, Spiegelhalter D, Cox D: Quality of life measures in health care. I: Applications and issues in assessment. BMJ 1992, 305:1074-1077.