Jaki instrument powinienem wybrać do pomiaru jakości życia u pacjenta ze stwardnieniem rozsianym? Przewodnik praktyczny Artykuł przeglądowy
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Opublikowane:
cze 30, 2013
Słowa kluczowe:
stwardnienie rozsiane, jakość życia zależna od zdrowia, użyteczność stanu zdrowia, SF-36, EQ-5D
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Abstrakt
Potrzeba uwzględnienia w procesie leczniczym perspektywy pacjenta oraz jakości jego życia jest niekwestionowana. Opracowano ponad 700 instrumentów służących do oceny jakości życia zależnej od zdrowia bądź jej składowych. W odniesieniu do stwardnienia rozsianego istnieje kilkanaście instrumentów specyficznych chorobowo. Mnogość dostępnych narzędzi i podejść w nich prezentowanych może budzić dezorientację.
W niniejszej pracy podejmiemy próbę usystematyzowania wiedzy o instrumentach, które można wykorzystać do oceny jakości życia chorych ze stwardnieniem rozsianym. Omówimy kolejno: kwestionariusze generyczne, specyficzne chorobowo i specyficzne objawowo bądź funkcjonalnie. Ponadto przedyskutujemy kryteria wyboru optymalnego narzędzia.
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Artykuły
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Bibliografia
1. Fayers P.M., Machin D.: Quality of Life: The assessment, analysis and interpretation of patient-reported outcomes. John Wiley & Sons, Chichester 2007: 3-30.
2. Drummond M., O’Brien B.J., Stoddart G.L., Torrance G.W.: Methods for the Economic Evaluation of Health Care Programmes. Oxford University Press, Oxford 1999: 139-182.
3. Fayers P.M., Hays R.D.: Assessing Quality Of Life In Clinical Trials. Methods and practice. Oxford University Press, Oxford 2005: 3-8.
4. Ware J.E. Jr, Sherbourne C.D.: The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med. Care 1992; 30: 473-483.
5. McHorney C.A., Ware J.E. Jr, Raczek A.E.: The MOS 36-Item Short-Form Health Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med. Care 1993; 31: 247-263.
6. McHorney C.A., Ware J.E. Jr, Lu J.F. et al.: The MOS 36-item Short-Form Health Survey (SF-36): III. Tests of data quality, scaling assumptions, and reliability across diverse patient groups. Med. Care 1994; 32: 40-66.
7. Tylka J., Piotrowicz R.: Kwestionariusz oceny jakości życia SF-36 – wersja polska. Kardiol. Pol. 2009; 67: 1166-1169.
8. Żołnierczyk-Zreda D.: Polska wersja kwestionariusza SF-36v2 do badania jakości życia. CIOP-PIB, Warszawa 2009: 1-99.
9. Ware J. Jr, Kosinski M., Keller S.D.: A 12-Item Short-Form Health Survey: construction of scales and preliminary tests of reliability and validity. Med. Care 1996; 34: 220-233.
10. Gilson B.S., Gilson J.S., Bergner M. et al.: The sickness impact profile. Development of an outcome measure of health care. Am. J. Public Health 1975; 65: 1304-1310.
11. Pollard W.E., Bobbitt R.A., Bergner M. et al.: The Sickness Impact Profile: reliability of a health status measure. Med. Care 1976; 14: 146-155.
12. Bergner M., Bobbitt R.A., Pollard W.E. et al.: The sickness impact profile: validation of a health status measure. Med. Care 1976; 14: 57-67.
13. Hunt S.M., McKenna S.P., McEwen J. et al.: The Nottingham health Profile: subjective health status and medical consultations. Social Sciences and Medicine. 1981; 15: 221-229.
14. The World Health Organization Quality of Life Assessment (WHOQOL): development and general psychometric properties. Soc. Sci. Med. 1998; 46: 1569-1585.
15. The WHOQOL Group: Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychol. Med. 1998; 28: 551-558.
16. The EuroQol Group: EuroQol – a new facility for the measurement of health-related quality of life. Health Policy 1990; 16: 199-208.
17. Golicki D., Jakubczyk M., Niewada M. et al.: Valuation of EQ-5D health states in Poland: first TTO-based social value set in Central and Eastern Europe. Value Health 2010; 13: 289-297.
18. Golicki D., Niewada M., Jakubczyk M. et al.: Self-assessed health status in Poland: EQ-5D findings from the Polish valuation study. Pol. Arch. Med. Wewn. 2010; 120: 276-281.
19. Janssen M.F., Pickard A.S., Golicki D. et al.: Measurement properties of the EQ-5D-5L compared to the EQ-5D-3L across eight patient groups: a multi-country study. Qual. Life Res. 2012 [online].
20. Horsman J., Furlong W., Feeny D. et al.: The Health Utilities Index (HUI(R)): concepts, measurement properties and applications. Health Qual. Life Outcomes 2003; 16: 54.
21. Cella D.F., Dineen K., Arnason B. et al.: Validation of the functional assessment of multiple sclerosis quality of life instrument. Neurology 1996; 47: 129-139.
22. Vickrey B.G., Hays R.D., Harooni R. et al.: A health-related quality of life measure for multiple sclerosis. Qual. Life Res. 1995; 4: 187-206.
23. Fischer J.S., LaRocca N.G., Miller D.M. et al.: Recent developments in the assessment of quality of life in multiple sclerosis (MS). Mult. Scler. 1999; 5: 251-259.
24. Gold S.M., Heesen C., Schulz H. et al.: 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.
25. Hobart J., Lamping D., Fitzpatrick R. et al.: The Multiple Sclerosis Impact Scale (MSIS-29): a new patient-based outcome measure. Brain 2001; 124: 962-973.
26. Simeoni M., Auquier P., Fernandez O. et al.: MusiQol study group. Validation of the Multiple Sclerosis International Quality of Life questionnaire. Mult. Scler. 2008; 14: 219-230.
27. Hobart J.C., Riazi A., Lamping D.L. et al.: Measuring the impact of MS on walking ability: the 12-Item MS Walking Scale (MSWS-12). Neurology 2003; 14: 31-36.
28. Hobart J.C., Riazi A., Thompson A.J. et al.: Getting the measure of spasticity in multiple sclerosis: the Multiple Sclerosis Spasticity Scale (MSSS-88). Brain 2006; 129: 224-234.
29. Riazi A., Porter B., Chataway J. et al.: A tool to measure the attributes of receiving IV therapy in a home versus hospital setting: the Multiple Sclerosis Relapse Management Scale (MSRMS). Health Qual. Life Outcomes 2011; 9: 80.
30. Benito-León J., Rivera-Navarro J., Guerrero A.L.; Caregiver Quality of Life In Multiple Sclerosis (CAREQOL-MS) Study Group: The CAREQOL-MS was a useful instrument to measure caregiver quality of life in multiple sclerosis. J. Clin. Epidemiol. 2011; 64: 675-686.
31. Robnett R.H., Gliner J.A.: Qual-OT: a quality of life assessment tool. Occupational Therapy Journal of Research 1995; 15: 198-214.
32. Kossakowska M.: Standaryzacja polskiej wersji Kwestionariusza do Oceny Jakości Życia w Stwardnieniu Rozsianym (FAMS). Psychologia Jakości Życia 2004; 3: 61-80.
33. Jaracz K., Kołcz B., Pawlak M.: Właściwości psychometryczne polskiej wersji kwestionariusza do oceny jakości życia chorych na stwardnienie rozsiane MSQOL-54 – wyniki wstępne. Neurol. Neurochir. Pol. 2008; 42: 478-479.
34. Jamroz-Wiśniewska A., Papuć E., Bartosik-Psujek H. et al.: Validation of selected aspects of psychometry of the Polish version of the Multiple Sclerosis Impact Scale 29 (MSIS-29). Neurol. Neurochir. Pol. 2007; 41: 215-222.
35. Jamroz-Wiśniewska A., Stelmasiak Z., Bartosik-Psujek H.: Validation analysis of the Polish version of the Multiple Sclerosis International Quality of Life Questionnaire (MusiQoL). Neurol. Neurochir. Pol. 2011; 45: 235-244.
36. Dittner A.J., Wessely S.C., Brown R.G.: The assessment of fatigue: a practical guide for clinicians and researchers. J. Psychosom. Res. 2004; 56: 157-170.
37. Opara J.A., Jaracz K., Brola W.: Quality of life in multiple sclerosis. J. Med. Life 2010; 3: 352-358.
38. Kaplan R.M., Atkins C.J., Timms R.: Validity of a quality of well-being scale as an outcome measure in chronic obstructive pulmonary disease. Journal of Chronic Diseases 1984; 37: 85-95.
39. Wicks P., Vaughan T.E., Massagli M.P.: The multiple sclerosis rating scale, revised (MSRS-R): development, refinement, and psychometric validation using an online community. Health Qual. Life Outcomes 2012; 10: 70.
40. Schwartz C.E., Vollmer T., Lee H.: Reliability and validity of two self-report measures of impairment and disability for MS. North American Research Consortium on Multiple Sclerosis Outcomes Study Group. Neurology 1999; 52: 63-70.
41. Dilorenzo T., Halper J., Picone M.A.: Reliability and validity of the multiple sclerosis quality of life inventory in older individuals. Disabil. Rehabil. 2003; 19(25): 891-897.
42. Marrie R.A., Miller D.M., Chelune G.J. et al.: Validity and reliability of the MSQLI in cognitively impaired patients with multiple sclerosis. Mult. Scler. 2003; 9: 621-626.
43. Riazi A., Hobart J.C., Lamping D.L. et al.: Multiple Sclerosis Impact Scale (MSIS-29): reliability and validity in hospital based samples. J. Neurol. Neurosurg. Psychiatry 2002; 73: 701-704.
44. Hobart J.C., Riazi A., Lamping D.L. et al.: How responsive is the Multiple Sclerosis Impact Scale (MSIS-29)? A comparison with some other self report scales. J. Neurol. Neurosurg. Psychiatry 2005; 76: 1539-1543.
45. McGuigan C., Hutchinson M.: Confirming the validity and responsiveness of the Multiple Sclerosis Walking Scale-12 (MSWS-12). Neurology 2004; 8(62): 2103-2105.
2. Drummond M., O’Brien B.J., Stoddart G.L., Torrance G.W.: Methods for the Economic Evaluation of Health Care Programmes. Oxford University Press, Oxford 1999: 139-182.
3. Fayers P.M., Hays R.D.: Assessing Quality Of Life In Clinical Trials. Methods and practice. Oxford University Press, Oxford 2005: 3-8.
4. Ware J.E. Jr, Sherbourne C.D.: The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med. Care 1992; 30: 473-483.
5. McHorney C.A., Ware J.E. Jr, Raczek A.E.: The MOS 36-Item Short-Form Health Survey (SF-36): II. Psychometric and clinical tests of validity in measuring physical and mental health constructs. Med. Care 1993; 31: 247-263.
6. McHorney C.A., Ware J.E. Jr, Lu J.F. et al.: The MOS 36-item Short-Form Health Survey (SF-36): III. Tests of data quality, scaling assumptions, and reliability across diverse patient groups. Med. Care 1994; 32: 40-66.
7. Tylka J., Piotrowicz R.: Kwestionariusz oceny jakości życia SF-36 – wersja polska. Kardiol. Pol. 2009; 67: 1166-1169.
8. Żołnierczyk-Zreda D.: Polska wersja kwestionariusza SF-36v2 do badania jakości życia. CIOP-PIB, Warszawa 2009: 1-99.
9. Ware J. Jr, Kosinski M., Keller S.D.: A 12-Item Short-Form Health Survey: construction of scales and preliminary tests of reliability and validity. Med. Care 1996; 34: 220-233.
10. Gilson B.S., Gilson J.S., Bergner M. et al.: The sickness impact profile. Development of an outcome measure of health care. Am. J. Public Health 1975; 65: 1304-1310.
11. Pollard W.E., Bobbitt R.A., Bergner M. et al.: The Sickness Impact Profile: reliability of a health status measure. Med. Care 1976; 14: 146-155.
12. Bergner M., Bobbitt R.A., Pollard W.E. et al.: The sickness impact profile: validation of a health status measure. Med. Care 1976; 14: 57-67.
13. Hunt S.M., McKenna S.P., McEwen J. et al.: The Nottingham health Profile: subjective health status and medical consultations. Social Sciences and Medicine. 1981; 15: 221-229.
14. The World Health Organization Quality of Life Assessment (WHOQOL): development and general psychometric properties. Soc. Sci. Med. 1998; 46: 1569-1585.
15. The WHOQOL Group: Development of the World Health Organization WHOQOL-BREF quality of life assessment. Psychol. Med. 1998; 28: 551-558.
16. The EuroQol Group: EuroQol – a new facility for the measurement of health-related quality of life. Health Policy 1990; 16: 199-208.
17. Golicki D., Jakubczyk M., Niewada M. et al.: Valuation of EQ-5D health states in Poland: first TTO-based social value set in Central and Eastern Europe. Value Health 2010; 13: 289-297.
18. Golicki D., Niewada M., Jakubczyk M. et al.: Self-assessed health status in Poland: EQ-5D findings from the Polish valuation study. Pol. Arch. Med. Wewn. 2010; 120: 276-281.
19. Janssen M.F., Pickard A.S., Golicki D. et al.: Measurement properties of the EQ-5D-5L compared to the EQ-5D-3L across eight patient groups: a multi-country study. Qual. Life Res. 2012 [online].
20. Horsman J., Furlong W., Feeny D. et al.: The Health Utilities Index (HUI(R)): concepts, measurement properties and applications. Health Qual. Life Outcomes 2003; 16: 54.
21. Cella D.F., Dineen K., Arnason B. et al.: Validation of the functional assessment of multiple sclerosis quality of life instrument. Neurology 1996; 47: 129-139.
22. Vickrey B.G., Hays R.D., Harooni R. et al.: A health-related quality of life measure for multiple sclerosis. Qual. Life Res. 1995; 4: 187-206.
23. Fischer J.S., LaRocca N.G., Miller D.M. et al.: Recent developments in the assessment of quality of life in multiple sclerosis (MS). Mult. Scler. 1999; 5: 251-259.
24. Gold S.M., Heesen C., Schulz H. et al.: 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.
25. Hobart J., Lamping D., Fitzpatrick R. et al.: The Multiple Sclerosis Impact Scale (MSIS-29): a new patient-based outcome measure. Brain 2001; 124: 962-973.
26. Simeoni M., Auquier P., Fernandez O. et al.: MusiQol study group. Validation of the Multiple Sclerosis International Quality of Life questionnaire. Mult. Scler. 2008; 14: 219-230.
27. Hobart J.C., Riazi A., Lamping D.L. et al.: Measuring the impact of MS on walking ability: the 12-Item MS Walking Scale (MSWS-12). Neurology 2003; 14: 31-36.
28. Hobart J.C., Riazi A., Thompson A.J. et al.: Getting the measure of spasticity in multiple sclerosis: the Multiple Sclerosis Spasticity Scale (MSSS-88). Brain 2006; 129: 224-234.
29. Riazi A., Porter B., Chataway J. et al.: A tool to measure the attributes of receiving IV therapy in a home versus hospital setting: the Multiple Sclerosis Relapse Management Scale (MSRMS). Health Qual. Life Outcomes 2011; 9: 80.
30. Benito-León J., Rivera-Navarro J., Guerrero A.L.; Caregiver Quality of Life In Multiple Sclerosis (CAREQOL-MS) Study Group: The CAREQOL-MS was a useful instrument to measure caregiver quality of life in multiple sclerosis. J. Clin. Epidemiol. 2011; 64: 675-686.
31. Robnett R.H., Gliner J.A.: Qual-OT: a quality of life assessment tool. Occupational Therapy Journal of Research 1995; 15: 198-214.
32. Kossakowska M.: Standaryzacja polskiej wersji Kwestionariusza do Oceny Jakości Życia w Stwardnieniu Rozsianym (FAMS). Psychologia Jakości Życia 2004; 3: 61-80.
33. Jaracz K., Kołcz B., Pawlak M.: Właściwości psychometryczne polskiej wersji kwestionariusza do oceny jakości życia chorych na stwardnienie rozsiane MSQOL-54 – wyniki wstępne. Neurol. Neurochir. Pol. 2008; 42: 478-479.
34. Jamroz-Wiśniewska A., Papuć E., Bartosik-Psujek H. et al.: Validation of selected aspects of psychometry of the Polish version of the Multiple Sclerosis Impact Scale 29 (MSIS-29). Neurol. Neurochir. Pol. 2007; 41: 215-222.
35. Jamroz-Wiśniewska A., Stelmasiak Z., Bartosik-Psujek H.: Validation analysis of the Polish version of the Multiple Sclerosis International Quality of Life Questionnaire (MusiQoL). Neurol. Neurochir. Pol. 2011; 45: 235-244.
36. Dittner A.J., Wessely S.C., Brown R.G.: The assessment of fatigue: a practical guide for clinicians and researchers. J. Psychosom. Res. 2004; 56: 157-170.
37. Opara J.A., Jaracz K., Brola W.: Quality of life in multiple sclerosis. J. Med. Life 2010; 3: 352-358.
38. Kaplan R.M., Atkins C.J., Timms R.: Validity of a quality of well-being scale as an outcome measure in chronic obstructive pulmonary disease. Journal of Chronic Diseases 1984; 37: 85-95.
39. Wicks P., Vaughan T.E., Massagli M.P.: The multiple sclerosis rating scale, revised (MSRS-R): development, refinement, and psychometric validation using an online community. Health Qual. Life Outcomes 2012; 10: 70.
40. Schwartz C.E., Vollmer T., Lee H.: Reliability and validity of two self-report measures of impairment and disability for MS. North American Research Consortium on Multiple Sclerosis Outcomes Study Group. Neurology 1999; 52: 63-70.
41. Dilorenzo T., Halper J., Picone M.A.: Reliability and validity of the multiple sclerosis quality of life inventory in older individuals. Disabil. Rehabil. 2003; 19(25): 891-897.
42. Marrie R.A., Miller D.M., Chelune G.J. et al.: Validity and reliability of the MSQLI in cognitively impaired patients with multiple sclerosis. Mult. Scler. 2003; 9: 621-626.
43. Riazi A., Hobart J.C., Lamping D.L. et al.: Multiple Sclerosis Impact Scale (MSIS-29): reliability and validity in hospital based samples. J. Neurol. Neurosurg. Psychiatry 2002; 73: 701-704.
44. Hobart J.C., Riazi A., Lamping D.L. et al.: How responsive is the Multiple Sclerosis Impact Scale (MSIS-29)? A comparison with some other self report scales. J. Neurol. Neurosurg. Psychiatry 2005; 76: 1539-1543.
45. McGuigan C., Hutchinson M.: Confirming the validity and responsiveness of the Multiple Sclerosis Walking Scale-12 (MSWS-12). Neurology 2004; 8(62): 2103-2105.