What instrument should I choose to measure the quality of life in a patient with multiple sclerosis? A practical guide Review article
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Published:
Jun 30, 2013
Keywords:
multiple sclerosis, health related quality of life, health state utility, SF-36, EQ-5D
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Abstract
The need to take into account in the process of healing the patient’s perspective and his quality of life is unquestionable. There are more than 700 instruments developed to assess the health related quality of life or its components. For multiple sclerosis, there are several disease specific instruments. The multitude of available tools and presented approaches may give rise to confusion.
In this paper, we will attempt to systematize the knowledge of instruments that can be used to assess quality of life in patients with multiple sclerosis. We will discuss in turn: generic questionnaires, disease-, symptom- or function specific questionnaires. We will discuss the criteria for selecting the optimal tool.
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References
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.