Skip to main content
Erschienen in:

01.02.2005 | Übersichten

Lebensqualität bei Multipler Sklerose

Messinstrumente, Bedeutung, Probleme und Perspektiven

verfasst von: Dr. W. Pöllmann, C. Busch, R. Voltz

Erschienen in: Der Nervenarzt | Ausgabe 2/2005

Einloggen, um Zugang zu erhalten

Zusammenfassung

Die Erfassung von Lebensqualität (LQ) hat bei Patienten mit Multipler Sklerose (MS) einen zunehmenden Stellenwert erhalten sowohl für eine komplexe intraindividuelle Verlaufserfassung unter symptomatischer, rehabilitativer oder immunologischer Therapie wie auch beim Vergleich von MS-Betroffenen mit Gesunden oder Patienten mit anderen Erkrankungen als auch unter pharmakoökonomischen Aspekten. Vielfältige Testverfahren sind verfügbar: allgemeine Tests wie Short Form SF-36 und Sickness Impact Profile, krankheitsspezifische wie MSQoL-54, Functional Assessment of MS (FAMS) oder Hamburg Quality of Life Assessment in MS (HAQUAMS) und patientengenerierte Messinstrumente wie Patient Generated Index (PGI) und Schedule for the Evolution of Individual Quality of Life Direct Weighting (SEIQoL-DW). Wichtige Einflussfaktoren der LQ sind Depressivität, kognitive Einschränkungen und Fatigue. Da Tests durchaus unterschiedliche Facetten der LQ erfassen, soll unsere Übersicht bei der Auswahl helfen, MS-Patienten mit ihren Bedürfnissen besser zu verstehen und ihnen auch beim Entwickeln von Zukunftsperspektiven, Therapieentscheidungen oder im Extremfall einer palliativmedizinischen Intervention ein hilfreicher ärztlicher Partner zu sein.
Literatur
1.
Zurück zum Zitat Amato MP, Ponziani G, Rossi F et al. (2001) Quality of life in multiple sclerosis: the impact of depression, fatigue and disability. Mult Scler 7(5):340–344CrossRefPubMed Amato MP, Ponziani G, Rossi F et al. (2001) Quality of life in multiple sclerosis: the impact of depression, fatigue and disability. Mult Scler 7(5):340–344CrossRefPubMed
2.
Zurück zum Zitat Andresen EM, Vahle VJ, Lollar D (2001) Proxy reliability: health-related quality of life (HRQoL) measures for people with disability. Qual Life Res 10(7):609–619CrossRefPubMed Andresen EM, Vahle VJ, Lollar D (2001) Proxy reliability: health-related quality of life (HRQoL) measures for people with disability. Qual Life Res 10(7):609–619CrossRefPubMed
3.
Zurück zum Zitat Arnoldus JH, Killestein J, Pfennings LE et al. (2000) Quality of life during the first 6 months of interferon-beta treatment in patients with MS. Mult Scler 6(5):338–342CrossRefPubMed Arnoldus JH, Killestein J, Pfennings LE et al. (2000) Quality of life during the first 6 months of interferon-beta treatment in patients with MS. Mult Scler 6(5):338–342CrossRefPubMed
4.
Zurück zum Zitat Aronson KJ (1997) Quality of life among persons with multiple sclerosis and their caregivers. Neurology 48(1):74–80PubMed Aronson KJ (1997) Quality of life among persons with multiple sclerosis and their caregivers. Neurology 48(1):74–80PubMed
5.
Zurück zum Zitat Benito-Leon J, Morales JM, Rivera-Navarro J (2002) Health-related quality of life and its relationship to cognitive and emotional functioning in multiple sclerosis patients. Eur J Neurol 9(5):497-502CrossRefPubMed Benito-Leon J, Morales JM, Rivera-Navarro J (2002) Health-related quality of life and its relationship to cognitive and emotional functioning in multiple sclerosis patients. Eur J Neurol 9(5):497-502CrossRefPubMed
6.
Zurück zum Zitat Ben-Zacharia AB, Lublin FD (2001) Palliative care in patients with multiple sclerosis. Neurol Clin 19(4):801–827PubMed Ben-Zacharia AB, Lublin FD (2001) Palliative care in patients with multiple sclerosis. Neurol Clin 19(4):801–827PubMed
7.
Zurück zum Zitat Berk C, Carr J, Sinden M et al. (2002) Thalamic deep brain stimulation for the treatment of tremor due to multiple sclerosis: a prospective study of tremor and quality of life. J Neurosurg 97(4):815–820PubMed Berk C, Carr J, Sinden M et al. (2002) Thalamic deep brain stimulation for the treatment of tremor due to multiple sclerosis: a prospective study of tremor and quality of life. J Neurosurg 97(4):815–820PubMed
8.
Zurück zum Zitat Bethoux F, Miller DM, Kinkel RP (2001) Recovery following acute exacerbations of multiple sclerosis: from impairment to quality of life. Mult Scler 7(2):137–142CrossRefPubMed Bethoux F, Miller DM, Kinkel RP (2001) Recovery following acute exacerbations of multiple sclerosis: from impairment to quality of life. Mult Scler 7(2):137–142CrossRefPubMed
9.
Zurück zum Zitat Bowen JD, Maravilla K, Margolin SB (2003) Open-label study of pirfenidone in patients with progressive forms of multiple sclerosis. Mult Scler 9:280–283CrossRefPubMed Bowen JD, Maravilla K, Margolin SB (2003) Open-label study of pirfenidone in patients with progressive forms of multiple sclerosis. Mult Scler 9:280–283CrossRefPubMed
10.
Zurück zum Zitat Brunet DG, Hopman WM, Singer MA et al. (1996) Measurement of health-related quality of life in multiple sclerosis patients. Can J Neurol Sci 23(2):99–103PubMed Brunet DG, Hopman WM, Singer MA et al. (1996) Measurement of health-related quality of life in multiple sclerosis patients. Can J Neurol Sci 23(2):99–103PubMed
11.
Zurück zum Zitat Bullinger M, Kirchberger I (1998) Der SF-36 Fragebogen zum Gesundheitszustand. Hogrefe, Göttingen. Original: Ware JE (1994) A 36-item short form SF-36 health survey manual and interpretation guide. The Health Institute, New England Medical Center, Boston Bullinger M, Kirchberger I (1998) Der SF-36 Fragebogen zum Gesundheitszustand. Hogrefe, Göttingen. Original: Ware JE (1994) A 36-item short form SF-36 health survey manual and interpretation guide. The Health Institute, New England Medical Center, Boston
12.
Zurück zum Zitat Caine ED, Schwid RS (2002) Multiple sclerosis, depression, and the risk of suicide. Neurology 59:662–663PubMed Caine ED, Schwid RS (2002) Multiple sclerosis, depression, and the risk of suicide. Neurology 59:662–663PubMed
13.
Zurück zum Zitat Canadian Burden of Illness study group (1998) Burden of illness of multiple sclerosis: Part II: Quality of life. Can J Neurol Sci 25(1):31–38PubMed Canadian Burden of Illness study group (1998) Burden of illness of multiple sclerosis: Part II: Quality of life. Can J Neurol Sci 25(1):31–38PubMed
14.
Zurück zum Zitat Cella DF, Dineen K, Arnason B et al. (1996) Validation of the functional assessment of multiple sclerosis quality of life instrument. Neurology 47(1):129–139PubMed Cella DF, Dineen K, Arnason B et al. (1996) Validation of the functional assessment of multiple sclerosis quality of life instrument. Neurology 47(1):129–139PubMed
15.
Zurück zum Zitat Cutajar R, Ferriani E, Scandellari C et al. (2000) Cognitive function and quality of life in multiple sclerosis patients. J Neurovirol 6(Suppl 2):S186–S190 Cutajar R, Ferriani E, Scandellari C et al. (2000) Cognitive function and quality of life in multiple sclerosis patients. J Neurovirol 6(Suppl 2):S186–S190
16.
Zurück zum Zitat Devins GM, Edworthy SM, Seland TP et al. (1993) Differences in illness intrusiveness across rheumatoid arthritis, end-stage renal disease, and multiple sclerosis. J Nerv Ment Dis 181(6):377–381PubMed Devins GM, Edworthy SM, Seland TP et al. (1993) Differences in illness intrusiveness across rheumatoid arthritis, end-stage renal disease, and multiple sclerosis. J Nerv Ment Dis 181(6):377–381PubMed
17.
Zurück zum Zitat Dorman PJ, Slattery J, Farrell B et al. (1997) A randomised comparison of the EuroQoL and Short Form-36 after stroke. BMJ 315:461PubMed Dorman PJ, Slattery J, Farrell B et al. (1997) A randomised comparison of the EuroQoL and Short Form-36 after stroke. BMJ 315:461PubMed
18.
Zurück zum Zitat Egner A, Phillips VL, Vora R et al. (2003) Depression, fatigue, and health-related quality of life among people with advanced multiple sclerosis: results from an exploratory telerehabilitation study. NeuroRehabilitation 18(2):125–133PubMed Egner A, Phillips VL, Vora R et al. (2003) Depression, fatigue, and health-related quality of life among people with advanced multiple sclerosis: results from an exploratory telerehabilitation study. NeuroRehabilitation 18(2):125–133PubMed
19.
Zurück zum Zitat Fabio RP, Choi T, Soderberg J et al. (1997) Health-related quality of life for patients with progressive multiple sclerosis: influence of rehabilitation. Phys Ther 77(12):1704–1716PubMed Fabio RP, Choi T, Soderberg J et al. (1997) Health-related quality of life for patients with progressive multiple sclerosis: influence of rehabilitation. Phys Ther 77(12):1704–1716PubMed
20.
Zurück zum Zitat Feinstein A (2002) An examination of suicidal intent in patients with multiple sclerosis. Neurology 59:674–678PubMed Feinstein A (2002) An examination of suicidal intent in patients with multiple sclerosis. Neurology 59:674–678PubMed
21.
Zurück zum Zitat Fischer JS, LaRocca NG, Miller DM et al. (1999) Recent developments in the assessment of quality of life in multiple sclerosis (MS). Mult Scler 5(4):251–259CrossRefPubMed Fischer JS, LaRocca NG, Miller DM et al. (1999) Recent developments in the assessment of quality of life in multiple sclerosis (MS). Mult Scler 5(4):251–259CrossRefPubMed
22.
Zurück zum Zitat Flachenecker P, Rieckmann P (2003) Early intervention in multiple sclerosis: better outcomes for patients and society? Drugs 63(15):1525–1533PubMed Flachenecker P, Rieckmann P (2003) Early intervention in multiple sclerosis: better outcomes for patients and society? Drugs 63(15):1525–1533PubMed
23.
Zurück zum Zitat Ford HL, Gerry E, Johnson MH et al. (2001) Health status and quality of life of people with multiple sclerosis. Disabil Rehabil 23(12):516–521CrossRefPubMed Ford HL, Gerry E, Johnson MH et al. (2001) Health status and quality of life of people with multiple sclerosis. Disabil Rehabil 23(12):516–521CrossRefPubMed
24.
Zurück zum Zitat Freeman JA, Langdon DW, Hobart JC et al. (1999) Inpatient rehabilitation in multiple sclerosis: do the benefits carry over into the community? Neurology 52(1):50–56PubMed Freeman JA, Langdon DW, Hobart JC et al. (1999) Inpatient rehabilitation in multiple sclerosis: do the benefits carry over into the community? Neurology 52(1):50–56PubMed
25.
Zurück zum Zitat Freeman JA, Hobart JC, Thompson AJ (2001) Does adding MS-specific items to a generic measure (the SF-36) improve measurement? Neurology 57(1):68–74PubMed Freeman JA, Hobart JC, Thompson AJ (2001) Does adding MS-specific items to a generic measure (the SF-36) improve measurement? Neurology 57(1):68–74PubMed
26.
Zurück zum Zitat Freeman JA, Thompson AJ, Fitzpatrick R et al. (2001) Interferon-β1b in the treatment of secondary progressive MS: impact on quality of life. Neurology 57(10):1870–1875PubMed Freeman JA, Thompson AJ, Fitzpatrick R et al. (2001) Interferon-β1b in the treatment of secondary progressive MS: impact on quality of life. Neurology 57(10):1870–1875PubMed
27.
Zurück zum Zitat Frühwald S, Löffler-Stastka H, Eher R et al. (2001) Zusammenhänge zwischen Depression, Angst und Lebensqualität bei MultiplerSklerose. Wien Klin Wochenschr 113(9):333–338PubMed Frühwald S, Löffler-Stastka H, Eher R et al. (2001) Zusammenhänge zwischen Depression, Angst und Lebensqualität bei MultiplerSklerose. Wien Klin Wochenschr 113(9):333–338PubMed
28.
Zurück zum Zitat Gianino JM, York MM, Paice JA et al. (1998) Quality of life: effect of reduced spasticity from intrathecal baclofen. J Neurosci Nurs 30(1):47–54PubMed Gianino JM, York MM, Paice JA et al. (1998) Quality of life: effect of reduced spasticity from intrathecal baclofen. J Neurosci Nurs 30(1):47–54PubMed
29.
Zurück zum Zitat Gold SM, Heesen C, Schulz H et al. (2001) Disease specific quality of life instruments in multiple sclerosis: validation of the Hamburg Quality of Life Questionnaire in Multiple Sclerosis (HAQUAMS). Mult Scler 7(2):119–130CrossRefPubMed Gold SM, Heesen C, Schulz H et al. (2001) Disease specific quality of life instruments in multiple sclerosis: validation of the Hamburg Quality of Life Questionnaire in Multiple Sclerosis (HAQUAMS). Mult Scler 7(2):119–130CrossRefPubMed
30.
Zurück zum Zitat Gold SM, Schulz H, Mönch A et al. (2003) Cognitive impairment in multiple sclerosis does not affect reliability and validity of self-report health measures. Mult Scler 9:404–410CrossRefPubMed Gold SM, Schulz H, Mönch A et al. (2003) Cognitive impairment in multiple sclerosis does not affect reliability and validity of self-report health measures. Mult Scler 9:404–410CrossRefPubMed
31.
Zurück zum Zitat Gulick EE (1997) Correlates of quality of life among persons with multiple sclerosis. Nurs Res 46(6):305–311CrossRefPubMed Gulick EE (1997) Correlates of quality of life among persons with multiple sclerosis. Nurs Res 46(6):305–311CrossRefPubMed
32.
Zurück zum Zitat Haupts M, Elias G, Hardt C et al. (2003) Lebensqualität bei Patienten mit schubförmiger MS in Deutschland. Nervenarzt 74:144–150CrossRefPubMed Haupts M, Elias G, Hardt C et al. (2003) Lebensqualität bei Patienten mit schubförmiger MS in Deutschland. Nervenarzt 74:144–150CrossRefPubMed
33.
Zurück zum Zitat Haupts MR, Hardt C, Pöhlau D et al. (2001) Quality of life as a predictor for change in disability in MS. Neurology 56(9):1250PubMed Haupts MR, Hardt C, Pöhlau D et al. (2001) Quality of life as a predictor for change in disability in MS. Neurology 56(9):1250PubMed
34.
Zurück zum Zitat Henriksson F, Fredrikson S, Masterman T et al. (2001) Costs, quality of life and disease severity in multiple sclerosis: a cross-sectional study in Sweden. Eur J Neurol 8(1):27–35CrossRefPubMed Henriksson F, Fredrikson S, Masterman T et al. (2001) Costs, quality of life and disease severity in multiple sclerosis: a cross-sectional study in Sweden. Eur J Neurol 8(1):27–35CrossRefPubMed
35.
Zurück zum Zitat Hermann BP, Vickrey B, Hays RD et al. (1996) A comparison of health-related quality of life in patients with epilepsy, diabetes and multiple sclerosis. Epilepsy Res 25(2):113–118CrossRefPubMed Hermann BP, Vickrey B, Hays RD et al. (1996) A comparison of health-related quality of life in patients with epilepsy, diabetes and multiple sclerosis. Epilepsy Res 25(2):113–118CrossRefPubMed
36.
Zurück zum Zitat Hickey AM, Bury G, O’Boyle CA et al. (1996) A new short-form individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDS. BMJ 313:29–33PubMed Hickey AM, Bury G, O’Boyle CA et al. (1996) A new short-form individual quality of life measure (SEIQoL-DW): application in a cohort of individuals with HIV/AIDS. BMJ 313:29–33PubMed
37.
Zurück zum Zitat Hooper J, Whittle IR (2003) Costs of thalamic deep brain stimulation for movement disorders in patients with multiple sclerosis. Br J Neurosurg 17(1):40–45CrossRefPubMed Hooper J, Whittle IR (2003) Costs of thalamic deep brain stimulation for movement disorders in patients with multiple sclerosis. Br J Neurosurg 17(1):40–45CrossRefPubMed
38.
Zurück zum Zitat Janardhan V, Bakshi R (2000) Quality of life and its relationship to brain lesions and atrophy on magnetic resonance images in 60 patients with multiple sclerosis. Arch Neurol 57(10):1485–1491CrossRefPubMed Janardhan V, Bakshi R (2000) Quality of life and its relationship to brain lesions and atrophy on magnetic resonance images in 60 patients with multiple sclerosis. Arch Neurol 57(10):1485–1491CrossRefPubMed
39.
Zurück zum Zitat Janardhan V, Bakshi R (2002) Quality of life in patients with multiple sclerosis. The impact of fatigue and depression. J Neurol Sci 205(1):51–58CrossRefPubMed Janardhan V, Bakshi R (2002) Quality of life in patients with multiple sclerosis. The impact of fatigue and depression. J Neurol Sci 205(1):51–58CrossRefPubMed
40.
Zurück zum Zitat Janssens AC, Doorn PA, Boer JB et al. (2003) Impact of recently diagnosed multiple sclerosis on quality of life, anxiety, depression and distress of patients and partners. Acta Neurol Scand 108(6):389–395PubMed Janssens AC, Doorn PA, Boer JB et al. (2003) Impact of recently diagnosed multiple sclerosis on quality of life, anxiety, depression and distress of patients and partners. Acta Neurol Scand 108(6):389–395PubMed
41.
Zurück zum Zitat Janssens ACJW, van Doorn PA, de Boer JB et al. (2003) Anxiety and depression influence the relation between disability status and quality of life in multiple sclerosis. Mult Scler 9:397–403CrossRefPubMed Janssens ACJW, van Doorn PA, de Boer JB et al. (2003) Anxiety and depression influence the relation between disability status and quality of life in multiple sclerosis. Mult Scler 9:397–403CrossRefPubMed
42.
Zurück zum Zitat Jonsson A, Dock J, Ravnborg MH (1996) Quality of life as a measure of rehabilitation outcome in patients with multiple sclerosis. Acta Neurol Scand 93(4):229–235PubMed Jonsson A, Dock J, Ravnborg MH (1996) Quality of life as a measure of rehabilitation outcome in patients with multiple sclerosis. Acta Neurol Scand 93(4):229–235PubMed
43.
Zurück zum Zitat Kenealy PM, Beaumont GJ, Lintern T et al. (2000) Autobiographical memory, depression and quality of life in multiple sclerosis. J Clin Exp Neuropsychol 22(1):125–131CrossRefPubMed Kenealy PM, Beaumont GJ, Lintern T et al. (2000) Autobiographical memory, depression and quality of life in multiple sclerosis. J Clin Exp Neuropsychol 22(1):125–131CrossRefPubMed
44.
Zurück zum Zitat Kirchberger I (2000) Der SF-36-Fragebogen zum Gesundheitszustand: Anwendung, Auswertung und Interpretation, Kapitel II-2. In: Ravens-Sieberer U, Cieza A (Hrsg) Lebensqualität und Gesundheitsökonomie in der Medizin. Ecomed, Landsberg, pp 73–85 Kirchberger I (2000) Der SF-36-Fragebogen zum Gesundheitszustand: Anwendung, Auswertung und Interpretation, Kapitel II-2. In: Ravens-Sieberer U, Cieza A (Hrsg) Lebensqualität und Gesundheitsökonomie in der Medizin. Ecomed, Landsberg, pp 73–85
45.
Zurück zum Zitat Kobelt G, Lindgren P, Smala A et al. (2001) Kosten und Lebensqualität bei Multipler Sklerose. HEPAC 2:60–68CrossRef Kobelt G, Lindgren P, Smala A et al. (2001) Kosten und Lebensqualität bei Multipler Sklerose. HEPAC 2:60–68CrossRef
46.
Zurück zum Zitat Kohlmann T (2000) Das Nottingham Health Profile und das Sickness Impact Profile, Kapitel II-3. In: Ravens-Sieberer U, Cieza A (Hrsg) Lebensqualität und Gesundheitsökonomie in der Medizin. Ecomed, Landsberg, pp 86–97. Original: Bergner M, Bobbit RA, Carter WB, et al. (1981) The sickness impact profile (SIP): development and final revision of a health status measurement. Med Care 19:787–805 Kohlmann T (2000) Das Nottingham Health Profile und das Sickness Impact Profile, Kapitel II-3. In: Ravens-Sieberer U, Cieza A (Hrsg) Lebensqualität und Gesundheitsökonomie in der Medizin. Ecomed, Landsberg, pp 86–97. Original: Bergner M, Bobbit RA, Carter WB, et al. (1981) The sickness impact profile (SIP): development and final revision of a health status measurement. Med Care 19:787–805
47.
Zurück zum Zitat Lankhorst GJ, Jelles F, Smits RC et al. (1996) Quality of life in multiple sclerosis: the disability and impact profile (DIP). J Neurol 243(6):469–474PubMed Lankhorst GJ, Jelles F, Smits RC et al. (1996) Quality of life in multiple sclerosis: the disability and impact profile (DIP). J Neurol 243(6):469–474PubMed
48.
Zurück zum Zitat Lappin MS, Lawrie FW, Richards TL et al. (2003) Effects of a pulsed electromagnetic therapy on multiple sclerosis fatigue and quality of life: a double-blind, placebo controlled trial. Altern Ther Health Med 9(4):38–48 Lappin MS, Lawrie FW, Richards TL et al. (2003) Effects of a pulsed electromagnetic therapy on multiple sclerosis fatigue and quality of life: a double-blind, placebo controlled trial. Altern Ther Health Med 9(4):38–48
49.
Zurück zum Zitat Lintern TC, Beaumont JG, Kenealy PM et al. (2001) Quality of Life (QoL) in severely disabled multiple sclerosis patients: comparison of three QoL measures using multidimensional scaling. Qual Life Res 10(4):371–378CrossRefPubMed Lintern TC, Beaumont JG, Kenealy PM et al. (2001) Quality of Life (QoL) in severely disabled multiple sclerosis patients: comparison of three QoL measures using multidimensional scaling. Qual Life Res 10(4):371–378CrossRefPubMed
50.
Zurück zum Zitat Marrie RA, Miller DM, Chelune GJ et al. (2003) Validity and reliability of the MSQLI in cognitively impaired patients with multiple sclerosis. Mult Scler 9:621–626CrossRefPubMed Marrie RA, Miller DM, Chelune GJ et al. (2003) Validity and reliability of the MSQLI in cognitively impaired patients with multiple sclerosis. Mult Scler 9:621–626CrossRefPubMed
51.
Zurück zum Zitat Matsumoto J, Morrow D, Kaufman K et al. (2001) Surgical therapy for tremor in multiple sclerosis: an evaluation of outcome measures. Neurology 57(10):1876–1882PubMed Matsumoto J, Morrow D, Kaufman K et al. (2001) Surgical therapy for tremor in multiple sclerosis: an evaluation of outcome measures. Neurology 57(10):1876–1882PubMed
52.
Zurück zum Zitat McKeown LP, Porter-Armstrong AP, Baxter GD (2003) The needs and experiences of caregivers of individuals with multiple sclerosis: a systematic review. Clin Rehabil 17(3):234–248CrossRefPubMed McKeown LP, Porter-Armstrong AP, Baxter GD (2003) The needs and experiences of caregivers of individuals with multiple sclerosis: a systematic review. Clin Rehabil 17(3):234–248CrossRefPubMed
53.
Zurück zum Zitat Merkelbach S, Sittinger H, König J (2002) Is there a differential impact of fatigue and physical disability on quality of life in multiple sclerosis? J Nerv Ment Dis 190(6):388–393CrossRefPubMed Merkelbach S, Sittinger H, König J (2002) Is there a differential impact of fatigue and physical disability on quality of life in multiple sclerosis? J Nerv Ment Dis 190(6):388–393CrossRefPubMed
54.
Zurück zum Zitat Meyers AR, Gage H, Hendricks A (2000) Health-related quality of life in neurology. Arch Neurol 57(8):1224–1227CrossRefPubMed Meyers AR, Gage H, Hendricks A (2000) Health-related quality of life in neurology. Arch Neurol 57(8):1224–1227CrossRefPubMed
55.
Zurück zum Zitat Miller DM, Rudick RA, Cutter G et al. (2000) Clinical significance of the multiple sclerosis functional composite: relationship to patient-reported quality of life. Arch Neurol 57(9):1319–1324CrossRefPubMed Miller DM, Rudick RA, Cutter G et al. (2000) Clinical significance of the multiple sclerosis functional composite: relationship to patient-reported quality of life. Arch Neurol 57(9):1319–1324CrossRefPubMed
56.
Zurück zum Zitat Miller DM, Rudick RA, Baier M et al. (2003) Factors that predict health-related quality of life in patients with relapsing-remitting multiple sclerosis. Mult Scler 9(1):1–5CrossRefPubMed Miller DM, Rudick RA, Baier M et al. (2003) Factors that predict health-related quality of life in patients with relapsing-remitting multiple sclerosis. Mult Scler 9(1):1–5CrossRefPubMed
57.
Zurück zum Zitat Murphy N, Confavreux C, Haas J et al. (1998) Quality of life in multiple sclerosis in France, Germany, and the United Kingdom. J Neurol Neurosurg Psychiatry 65:460–466PubMed Murphy N, Confavreux C, Haas J et al. (1998) Quality of life in multiple sclerosis in France, Germany, and the United Kingdom. J Neurol Neurosurg Psychiatry 65:460–466PubMed
58.
Zurück zum Zitat Murrell RC, Kenealy PM, Beaumont JG et al. (1999) Assessing quality of life in persons with severe neurological disability associated with multiple sclerosis: the psychometric evaluation of two quality of life measures. Br J Health Psychol 4:349–362CrossRef Murrell RC, Kenealy PM, Beaumont JG et al. (1999) Assessing quality of life in persons with severe neurological disability associated with multiple sclerosis: the psychometric evaluation of two quality of life measures. Br J Health Psychol 4:349–362CrossRef
59.
Zurück zum Zitat Neudert C, Wasner M, Borasio GD (2001) Patients’ assessment of quality of life instruments: a randomised study of SIP, SF-36 and SEIQoL-DW in patients with amyotrophic lateral sclerosis. J Neurol Sci 191:103–109CrossRefPubMed Neudert C, Wasner M, Borasio GD (2001) Patients’ assessment of quality of life instruments: a randomised study of SIP, SF-36 and SEIQoL-DW in patients with amyotrophic lateral sclerosis. J Neurol Sci 191:103–109CrossRefPubMed
60.
Zurück zum Zitat Nicholl CR, Lincoln NB, Francis VM et al. (2001) Assessing quality of life in people with multiple sclerosis. Disabil Rehabil 23(14):597–603CrossRefPubMed Nicholl CR, Lincoln NB, Francis VM et al. (2001) Assessing quality of life in people with multiple sclerosis. Disabil Rehabil 23(14):597–603CrossRefPubMed
61.
Zurück zum Zitat Nortvedt MW, Riise T, Myhr KM et al. (1999) Quality of life in multiple sclerosis: measuring the disease effects more broadly. Neurology 53(5):1098–1103PubMed Nortvedt MW, Riise T, Myhr KM et al. (1999) Quality of life in multiple sclerosis: measuring the disease effects more broadly. Neurology 53(5):1098–1103PubMed
62.
Zurück zum Zitat Nortvedt MW, Riise T, Myhr KM et al. (1999) Type I interferons and the quality of life of multiple sclerosis patients. Results from a clinical trial on interferon alfa-2a. Mult Scler 5(5):317–322CrossRefPubMed Nortvedt MW, Riise T, Myhr KM et al. (1999) Type I interferons and the quality of life of multiple sclerosis patients. Results from a clinical trial on interferon alfa-2a. Mult Scler 5(5):317–322CrossRefPubMed
63.
Zurück zum Zitat Nortvedt MW, Riise T, Myhr KM et al. (2000) Quality of life as a predictor for change in disability in MS. Neurology 55(1):51–54PubMed Nortvedt MW, Riise T, Myhr KM et al. (2000) Quality of life as a predictor for change in disability in MS. Neurology 55(1):51–54PubMed
64.
Zurück zum Zitat Nortvedt MW, Riise T, Myhr KM et al. (2000) Performance of the SF-36, SF-12, and RAND-36 summary scales in a multiple sclerosis population. Med Care 38(10):1022–1028CrossRefPubMed Nortvedt MW, Riise T, Myhr KM et al. (2000) Performance of the SF-36, SF-12, and RAND-36 summary scales in a multiple sclerosis population. Med Care 38(10):1022–1028CrossRefPubMed
65.
Zurück zum Zitat Nortvedt MW, Riise T, Myhr KM et al. (2001) Reduced quality of life among multiple sclerosis patients with sexual disturbance and bladder dysfunction. Mult Scler 7(4):231–235CrossRefPubMed Nortvedt MW, Riise T, Myhr KM et al. (2001) Reduced quality of life among multiple sclerosis patients with sexual disturbance and bladder dysfunction. Mult Scler 7(4):231–235CrossRefPubMed
66.
Zurück zum Zitat Nortvedt MW, Riise T (2003) The use of quality of life measures in multiple sclerosis research. Mult Scler 9(1):63–72CrossRefPubMed Nortvedt MW, Riise T (2003) The use of quality of life measures in multiple sclerosis research. Mult Scler 9(1):63–72CrossRefPubMed
67.
Zurück zum Zitat O’Connor P, Lee L, Ng PT et al. (2001) Determinants of overall quality of life in secondary progressive MS: a longitudinal study. Neurology 57(5):889–891PubMed O’Connor P, Lee L, Ng PT et al. (2001) Determinants of overall quality of life in secondary progressive MS: a longitudinal study. Neurology 57(5):889–891PubMed
68.
Zurück zum Zitat Parkin D, Jacoby A, McNamee P et al. (2000) Treatment of multiple sclerosis with interferon beta: an appraisal of cost-effectiveness and quality of life. J Neurol Neurosurg Psychiatry 68(2):144–149CrossRefPubMed Parkin D, Jacoby A, McNamee P et al. (2000) Treatment of multiple sclerosis with interferon beta: an appraisal of cost-effectiveness and quality of life. J Neurol Neurosurg Psychiatry 68(2):144–149CrossRefPubMed
69.
Zurück zum Zitat Patten SB, Metz LM (2002) Hopelessness ratings in relapsing-remitting and secondary progressive multiple sclerosis. Int J Psychiatry Med 32(2):155–165PubMed Patten SB, Metz LM (2002) Hopelessness ratings in relapsing-remitting and secondary progressive multiple sclerosis. Int J Psychiatry Med 32(2):155–165PubMed
70.
Zurück zum Zitat Patti F, Cacopardo M, Palermo F et al. (2003) Health-related quality of life and depression in an Italian sample of multiple sclerosis patients. J Neurol Sci 211(1–2):55–62 Patti F, Cacopardo M, Palermo F et al. (2003) Health-related quality of life and depression in an Italian sample of multiple sclerosis patients. J Neurol Sci 211(1–2):55–62
71.
Zurück zum Zitat Patti F, Ciancio MR, Reggio E et al. (2002) The impact of outpatient rehabilitation on quality of life in multiple sclerosis. J Neurol 249(8):1027–1033CrossRefPubMed Patti F, Ciancio MR, Reggio E et al. (2002) The impact of outpatient rehabilitation on quality of life in multiple sclerosis. J Neurol 249(8):1027–1033CrossRefPubMed
72.
Zurück zum Zitat Petajan JH, Gappmaier E, White AT et al. (1996) Impact of aerobic training on fitness and quality of life in multiple sclerosis. Ann Neurol 39(4):432–441PubMed Petajan JH, Gappmaier E, White AT et al. (1996) Impact of aerobic training on fitness and quality of life in multiple sclerosis. Ann Neurol 39(4):432–441PubMed
73.
Zurück zum Zitat Pfennings L, Cohen L, Ader H et al. (1999) Exploring differences between subgroups of multiple sclerosis patients in health-related quality of life. J Neurol 246(7):587–591CrossRefPubMed Pfennings L, Cohen L, Ader H et al. (1999) Exploring differences between subgroups of multiple sclerosis patients in health-related quality of life. J Neurol 246(7):587–591CrossRefPubMed
74.
Zurück zum Zitat Pfennings L, Cohen L, Miller D et al. (1999) Using the Short Form-36 with multiple sclerosis patients in five countries: a cross-cultural comparison. Psychol Rep 85(1):19–31PubMed Pfennings L, Cohen L, Miller D et al. (1999) Using the Short Form-36 with multiple sclerosis patients in five countries: a cross-cultural comparison. Psychol Rep 85(1):19–31PubMed
75.
Zurück zum Zitat Pozzilli C, Brunetti M, Amicosante AM et al. (2002) Home based management in multiple sclerosis: results of a randomised controlled trial. J Neurol Neurosurg Psychiatry 73(3):250–255CrossRefPubMed Pozzilli C, Brunetti M, Amicosante AM et al. (2002) Home based management in multiple sclerosis: results of a randomised controlled trial. J Neurol Neurosurg Psychiatry 73(3):250–255CrossRefPubMed
76.
Zurück zum Zitat Rabins PV, Brooks BR (1981) Emotional disturbance in multiple sclerosis patients: validity of the General Health Questionnaire (GHQ). Psychol Med 11:425–427PubMed Rabins PV, Brooks BR (1981) Emotional disturbance in multiple sclerosis patients: validity of the General Health Questionnaire (GHQ). Psychol Med 11:425–427PubMed
77.
Zurück zum Zitat Rao SM, Leo GJ, Ellington L et al. (1991) Cognitive dysfunction in multiple sclerosis. II. Impact on employment and social functioning. Neurology 41:692–696PubMed Rao SM, Leo GJ, Ellington L et al. (1991) Cognitive dysfunction in multiple sclerosis. II. Impact on employment and social functioning. Neurology 41:692–696PubMed
78.
Zurück zum Zitat Reynolds F, Prior S (2003) “Sticking jewels in your life”: exploring women’s strategies for negotiating an acceptable quality of life with multiple sclerosis. Qual Health Res 13(9):1225–1251CrossRefPubMed Reynolds F, Prior S (2003) “Sticking jewels in your life”: exploring women’s strategies for negotiating an acceptable quality of life with multiple sclerosis. Qual Health Res 13(9):1225–1251CrossRefPubMed
79.
Zurück zum Zitat Riazi A, Hobart JC, Lamping DL et al. (2003) Evidence-based measurement in multiple sclerosis: the psychometric properties of the physical and psychological dimensions of three quality of life rating scales. Mult Scler 9:411–419. Test in: Hobart JC, Lamping DL, Fitzpatrick R et al. (2001) The Multiple Sclerosis Impact Scale (MSIS-29): a new patient-based outcome measure. Brain 124:962–973 Riazi A, Hobart JC, Lamping DL et al. (2003) Evidence-based measurement in multiple sclerosis: the psychometric properties of the physical and psychological dimensions of three quality of life rating scales. Mult Scler 9:411–419. Test in: Hobart JC, Lamping DL, Fitzpatrick R et al. (2001) The Multiple Sclerosis Impact Scale (MSIS-29): a new patient-based outcome measure. Brain 124:962–973
80.
Zurück zum Zitat Rice GP, Oger J, Duquette P et al. (1999) Treatment with interferon beta-1b improves quality of life in multiple sclerosis. Can J Neurol Sci 26(4):276–282PubMed Rice GP, Oger J, Duquette P et al. (1999) Treatment with interferon beta-1b improves quality of life in multiple sclerosis. Can J Neurol Sci 26(4):276–282PubMed
81.
Zurück zum Zitat Rothwell PM (1998) Quality of life in multiple sclerosis. J Neurol Neurosurg Psychiatry 65:433PubMed Rothwell PM (1998) Quality of life in multiple sclerosis. J Neurol Neurosurg Psychiatry 65:433PubMed
82.
Zurück zum Zitat Rothwell PM, McDowell Z, Wong CK et al. (1997) Doctors and patients don’t agree: cross-sectional study of patients’ and doctors’perceptions and assessments of disability in multiple sclerosis. BMJ 314:1580–1583PubMed Rothwell PM, McDowell Z, Wong CK et al. (1997) Doctors and patients don’t agree: cross-sectional study of patients’ and doctors’perceptions and assessments of disability in multiple sclerosis. BMJ 314:1580–1583PubMed
83.
Zurück zum Zitat Rotstein Z, Barak Y, Noy S et al. (2000) Quality of life in multiple sclerosis: development and validation of the ‘RAYS’ scale and comparison with the SF-36. Int J Qual Health Care 12(6):511–517CrossRefPubMed Rotstein Z, Barak Y, Noy S et al. (2000) Quality of life in multiple sclerosis: development and validation of the ‘RAYS’ scale and comparison with the SF-36. Int J Qual Health Care 12(6):511–517CrossRefPubMed
84.
Zurück zum Zitat Rudick RA, Miller D, Clough JD et al. (1992) Quality of life in multiple sclerosis. Comparison with inflammatory bowel disease and rheumatoid arthritis. Arch Neurol 49(12):1237–1242PubMed Rudick RA, Miller D, Clough JD et al. (1992) Quality of life in multiple sclerosis. Comparison with inflammatory bowel disease and rheumatoid arthritis. Arch Neurol 49(12):1237–1242PubMed
85.
Zurück zum Zitat Ruta DA, Garratt AM, Leng M et al. (1994) A new approach to the measurement of quality of life. The Patient-Generated Index. Med Care 32:1109–1126 Ruta DA, Garratt AM, Leng M et al. (1994) A new approach to the measurement of quality of life. The Patient-Generated Index. Med Care 32:1109–1126
86.
Zurück zum Zitat Schulenburg von der JM, Claes C, Greiner W et al. (1998) Die deutsche Version des EuroQol-Fragebogens. Z Gesundheitswiss 6:3–20. Original: EuroQoL Group (1990) EuroQoL—a new facility for the measurement of health related quality of life. Health Policy 16:199–208 Schulenburg von der JM, Claes C, Greiner W et al. (1998) Die deutsche Version des EuroQol-Fragebogens. Z Gesundheitswiss 6:3–20. Original: EuroQoL Group (1990) EuroQoL—a new facility for the measurement of health related quality of life. Health Policy 16:199–208
87.
Zurück zum Zitat Schumacher J, Klaiberg A, Brähler E (2003) Diagnostische Verfahren zu Lebensqualität und Wohlbefinden. Hogrefe, Göttingen, pp 9–24 Schumacher J, Klaiberg A, Brähler E (2003) Diagnostische Verfahren zu Lebensqualität und Wohlbefinden. Hogrefe, Göttingen, pp 9–24
88.
Zurück zum Zitat Schwartz CE, Brotman S, LaRocca N et al. (1998) Patient’s perception of quality of care provided by specialists and generalists. Mult Scler 4(5):426–432CrossRefPubMed Schwartz CE, Brotman S, LaRocca N et al. (1998) Patient’s perception of quality of care provided by specialists and generalists. Mult Scler 4(5):426–432CrossRefPubMed
89.
Zurück zum Zitat Schwartz CE, Coulthard-Morris L, Cole B et al. (1997) The quality-of-life effects of interferon beta-1b in multiple sclerosis. An extended Q-TWiST analysis. Arch Neurol 54(12):1475–1480PubMed Schwartz CE, Coulthard-Morris L, Cole B et al. (1997) The quality-of-life effects of interferon beta-1b in multiple sclerosis. An extended Q-TWiST analysis. Arch Neurol 54(12):1475–1480PubMed
90.
Zurück zum Zitat Schwartz CE, Vollmer T, Lee H et al. (1999) Reliability and validity of two self-report measures of impairment and disability for MS. Neurology 52:63–70PubMed Schwartz CE, Vollmer T, Lee H et al. (1999) Reliability and validity of two self-report measures of impairment and disability for MS. Neurology 52:63–70PubMed
91.
Zurück zum Zitat Shawaryn MA, Schiaffino KM, LaRocca NG et al. (2002) Determinants of health-related quality of life in multiple sclerosis: the role of illness intrusiveness. Mult Scler 8(4):310–318CrossRefPubMed Shawaryn MA, Schiaffino KM, LaRocca NG et al. (2002) Determinants of health-related quality of life in multiple sclerosis: the role of illness intrusiveness. Mult Scler 8(4):310–318CrossRefPubMed
92.
Zurück zum Zitat Solari A, Filippini G, Gasco P et al. (1999) Physical rehabilitation has a positive effect on disability in multiple sclerosis patients. Neurology 52:57–62PubMed Solari A, Filippini G, Gasco P et al. (1999) Physical rehabilitation has a positive effect on disability in multiple sclerosis patients. Neurology 52:57–62PubMed
93.
Zurück zum Zitat Solari A, Filippini G, Mendozzi L et al. (1999) Validation of Italian multiple sclerosis quality of life 54 questionnaire. J Neurol Neurosurg Psychiatry 67(2):158–162PubMed Solari A, Filippini G, Mendozzi L et al. (1999) Validation of Italian multiple sclerosis quality of life 54 questionnaire. J Neurol Neurosurg Psychiatry 67(2):158–162PubMed
94.
Zurück zum Zitat Somerset M, Peters TJ, Sharp DJ et al. (2003) Factors that contribute to quality of life outcomes prioritised by people with multiple sclerosis. Qual Life Res 12(1):21–29CrossRefPubMed Somerset M, Peters TJ, Sharp DJ et al. (2003) Factors that contribute to quality of life outcomes prioritised by people with multiple sclerosis. Qual Life Res 12(1):21–29CrossRefPubMed
95.
Zurück zum Zitat Somerset M, Sharp D, Campbell R (2002) Multiple sclerosis and quality of life: a qualitative investigation. J Health Serv Res Policy 7(3):151–159CrossRefPubMed Somerset M, Sharp D, Campbell R (2002) Multiple sclerosis and quality of life: a qualitative investigation. J Health Serv Res Policy 7(3):151–159CrossRefPubMed
96.
Zurück zum Zitat Stuifbergen AK, Becker H, Blozis S et al. (2003) A randomized clinical trial of a wellness intervention for women with multiple sclerosis. Arch Phys Med Rehabil 84(4):467–476CrossRefPubMed Stuifbergen AK, Becker H, Blozis S et al. (2003) A randomized clinical trial of a wellness intervention for women with multiple sclerosis. Arch Phys Med Rehabil 84(4):467–476CrossRefPubMed
97.
Zurück zum Zitat Svensson B, Gerdle B, Elert J (1994) Endurance training in patients with multiple sclerosis: five case studies. Phys Ther 74:1017–1026PubMed Svensson B, Gerdle B, Elert J (1994) Endurance training in patients with multiple sclerosis: five case studies. Phys Ther 74:1017–1026PubMed
98.
Zurück zum Zitat Thompson AJ (1998) Multiple sclerosis: rehabiltation measures. Semin Neurol 18:397–403PubMed Thompson AJ (1998) Multiple sclerosis: rehabiltation measures. Semin Neurol 18:397–403PubMed
99.
Zurück zum Zitat Vermersch P, de Seze J, Delisse B et al. (2002) Quality of life in multiple sclerosis: influence of interferon-beta1 a (Avonex) treatment. Mult Scler 8(5):377–381CrossRefPubMed Vermersch P, de Seze J, Delisse B et al. (2002) Quality of life in multiple sclerosis: influence of interferon-beta1 a (Avonex) treatment. Mult Scler 8(5):377–381CrossRefPubMed
100.
Zurück zum Zitat Vernay D, Gerbaud L, Clavelou P (2001) Qualité de vie et sclerose en plaques. Rev Neurol (Paris) 157(8–9 Pt 2):1139–1142 Vernay D, Gerbaud L, Clavelou P (2001) Qualité de vie et sclerose en plaques. Rev Neurol (Paris) 157(8–9 Pt 2):1139–1142
101.
Zurück zum Zitat Vickrey BG, Hays RD, Genovese BJ et al. (1997) Comparison of a generic to disease-targeted health-related quality-of-life measures for multiple sclerosis. J Clin Epidemiol 50(5):557–569CrossRefPubMed Vickrey BG, Hays RD, Genovese BJ et al. (1997) Comparison of a generic to disease-targeted health-related quality-of-life measures for multiple sclerosis. J Clin Epidemiol 50(5):557–569CrossRefPubMed
102.
Zurück zum Zitat Vickrey BG, Hays RD, Harooni R et al. (1995) A health-related quality of life measure for multiple sclerosis. Qual Life Res 4(3):187–206PubMed Vickrey BG, Hays RD, Harooni R et al. (1995) A health-related quality of life measure for multiple sclerosis. Qual Life Res 4(3):187–206PubMed
103.
Zurück zum Zitat Voltz R, Bernat J, Borasio GD et al. (eds) (2004) Palliative care in neurology. CNS Series, Oxford University Press, Oxford Voltz R, Bernat J, Borasio GD et al. (eds) (2004) Palliative care in neurology. CNS Series, Oxford University Press, Oxford
104.
Zurück zum Zitat Wang JL, Reimer MA, Metz LM et al. (2000) Major depression and quality of life in individuals with multiple sclerosis. Int J Psychiatry Med 30(4):309–317PubMed Wang JL, Reimer MA, Metz LM et al. (2000) Major depression and quality of life in individuals with multiple sclerosis. Int J Psychiatry Med 30(4):309–317PubMed
105.
Zurück zum Zitat Ward N, Winters S (2003) Results of a fatigue management programme in multiple sclerosis. Br J Nurs 12(18):1075–1080PubMed Ward N, Winters S (2003) Results of a fatigue management programme in multiple sclerosis. Br J Nurs 12(18):1075–1080PubMed
107.
Zurück zum Zitat Zajicek J, Fox P, Sanders H et al. (2003) Cannabinoids for treatment of spasticity and other symptoms related to multiple sclerosis (CAMS study): multicentre randomised placebo-controlled trial. Lancet 362(9395):1517–1526CrossRefPubMed Zajicek J, Fox P, Sanders H et al. (2003) Cannabinoids for treatment of spasticity and other symptoms related to multiple sclerosis (CAMS study): multicentre randomised placebo-controlled trial. Lancet 362(9395):1517–1526CrossRefPubMed
108.
Zurück zum Zitat Zifko UA, Rupp M, Schwarz S et al. (2002) Modafinil in treatment of fatigue in multiple sclerosis. Results of an open-label study. J Neurol 249(8):983–987CrossRefPubMed Zifko UA, Rupp M, Schwarz S et al. (2002) Modafinil in treatment of fatigue in multiple sclerosis. Results of an open-label study. J Neurol 249(8):983–987CrossRefPubMed
109.
Zurück zum Zitat Zivadinov R, Zorzon M, Tommasi MA et al. (2003) A longitudinal study of quality of life and side effects in patients with multiple sclerosis treated with interferon beta-1a. J Neurol Sci 216(1):113–118CrossRefPubMed Zivadinov R, Zorzon M, Tommasi MA et al. (2003) A longitudinal study of quality of life and side effects in patients with multiple sclerosis treated with interferon beta-1a. J Neurol Sci 216(1):113–118CrossRefPubMed
Metadaten
Titel
Lebensqualität bei Multipler Sklerose
Messinstrumente, Bedeutung, Probleme und Perspektiven
verfasst von
Dr. W. Pöllmann
C. Busch
R. Voltz
Publikationsdatum
01.02.2005
Erschienen in
Der Nervenarzt / Ausgabe 2/2005
Print ISSN: 0028-2804
Elektronische ISSN: 1433-0407
DOI
https://doi.org/10.1007/s00115-004-1790-8

Neu in den Fachgebieten Neurologie und Psychiatrie

Was tun bei Intoxikationen? Ein Anruf in der Giftzentrale

Über 35.000 Anfragen erreichen die Vergiftungs-Informations-Zentrale am Uniklinikum Freiburg jährlich. Welche Vergiftungen sind die häufigsten? Wie rettet man richtig im Giftnotfall? Was gibt es bei der Diagnostik zu beachten? An einer Auswahl typischer Fälle gibt Dr. Maren Hermanns-Clausen, die Leiterin der Vergiftungs-Informationszentrale, einen Einblick.

Hat es Vorteile, viel Wasser zu trinken?

Ein Review von randomisierten kontrollierten Studien (RCTs) spricht dafür, dass sich eine Erhöhung der Trinkmenge günstig auswirken kann, etwa, um das Risiko für Nierensteine zu senken. Ausgesprochen umfangreich ist die Datenlage indes nicht.

Mehr KI in der Radiologie – mehr Burnout?

Geht es nach einer chinesischen Befragungsstudie, ist die Burnout-Gefahr unter Radiologinnen und Radiologen, die (unfreiwillig) viel KI nutzen, höher als bei denen, die das nicht tun (müssen).


Die Belastung zählt

Viele Menschen haben den Eindruck, ihr Schlaf sei gestört. Oft ist das objektiv gar nicht der Fall. Es ist aber wichtig, vorurteilsfrei die Beschwerdeschilderung ernst zu nehmen.