Do generic utility measures capture what is important to the quality of life of people with multiple sclerosis?

Health and Quality of Life Outcomes

Volumn 11, Issue 1, 2013, Pages

  Kuspinar, Ayse ^a   Mayo, Nancy E ^a,b  

^a MCGILL UNIVERSITY   (Canada)

^b ROYAL VICTORIA HOSPITAL   (Canada)

Author keywords

Health related quality of life; Measurement; Multiple sclerosis; Quality of life; Utilities

Indexed keywords

ADULT; ARTICLE; BODY EQUILIBRIUM; COGNITION; EXPANDED DISABILITY STATUS SCALE; FATIGUE; FEMALE; HUMAN; HUMAN RELATION; INTERNATIONAL CLASSIFICATION OF FUNCTIONING, DISABILITY AND HEALTH; MAJOR CLINICAL STUDY; MALE; MOOD; MULTIPLE SCLEROSIS; QUALITY OF LIFE; SOCIAL LIFE; SPORT; WALKING; WORK;

ADULT; DISABILITY EVALUATION; FEMALE; HUMANS; INTERVIEWS AS TOPIC; MALE; MIDDLE AGED; MULTIPLE SCLEROSIS; OUTCOME ASSESSMENT (HEALTH CARE); QUALITY INDICATORS, HEALTH CARE; QUALITY OF LIFE; QUEBEC; REPRODUCIBILITY OF RESULTS; SICKNESS IMPACT PROFILE;

EID: 84876965022     PISSN: None     EISSN: 14777525     Source Type: Journal    
DOI: 10.1186/1477-7525-11-71     Document Type: Article

References (73)

1. Noseworthy JH, Lucchinetti C, Rodriguez M, Weinshenker BG. Multiple sclerosis. N Engl J Med 2000, 343:938-952. 10.1056/NEJM200009283431307, 11006371.
2. Burks J, Johnson K: Multiple S. Diagnosis, Medical Management, and Rehabilitation 2000, New York: Demos Medical.
3. Miller DM, Moore SM, Fox RJ, Atreja A, Fu AZ, Lee JC. Web-based self-management for patients with multiple sclerosis: a practical, randomized trial. Telemed J E-Health 2011, 17:5-13. 10.1089/tmj.2010.0133, 3064874, 21214498.
4. Barlow J, Turner A, Edwards R, Gilchrist M. A randomised controlled trial of lay-led self-management for people with multiple sclerosis. Patient Educ Couns 2009, 77:81-89. 10.1016/j.pec.2009.02.009, 19321290.
5. Bombardier CH, Cunniffe M, Wadhwani R, Gibbons LE, Blake KD, Kraft GH. The Efficacy of Telephone Counseling for Health Promotion in People With Multiple Sclerosis: A Randomized Controlled Trial. Arch Phys Med Rehabil 2008, 89(10):1849-1856. 10.1016/j.apmr.2008.03.021, 18929012.
6. McAuley E, Motl RW, Morris KS, Hu L, Doerksen SE, Elavsky S. Enhancing physical activity adherence and well-being in multiple sclerosis: a randomised controlled trial. Mult Scler 2007, 13:652-659. 10.1177/1352458506072188, 17548446.
7. Grossman P, Kappos L, Gensicke H, D'Souza M, Mohr DC, Penner IK. MS quality of life, depression, and fatigue improve after mindfulness training: a randomized trial. Neurology 2010, 75:1141-1149. 10.1212/WNL.0b013e3181f4d80d, 3463050, 20876468.
8. Forman AC, Lincoln NB. Evaluation of an adjustment group for people with multiple sclerosis: a pilot randomized controlled trial. Clin Rehabil 2010, 24:211-221. 10.1177/0269215509343492, 20026575.
9. Cosio D, Jin L, Siddique J, Mohr DC. The effect of telephone-administered cognitive-behavioral therapy on quality of life among patients with multiple sclerosis. Ann Behav Med 2011, 41:227-234. 10.1007/s12160-010-9236-y, 3108488, 21069585.
10. Kavia RB, De RD, Constantinescu CS, Stott CG, Fowler CJ. Randomized controlled trial of Sativex to treat detrusor overactivity in multiple sclerosis. Mult Scler 2010, 16:1349-1359. 10.1177/1352458510378020, 20829244.
11. Moller F, Poettgen J, Broemel F, Neuhaus A, Daumer M, Heesen C. HAGIL (Hamburg Vigil Study): A randomized placebo-controlled double-blind study with modafinil for treatment of fatigue in patients with multiple sclerosis. Mult Scler 2011, 17(8):1002-1009. 10.1177/1352458511402410, 21561959.
12. Freeman JA, Thompson AJ, Fitzpatrick R, Hutchinson M, Miltenburger C, Beckmann K. Interferon-beta1b in the treatment of secondary progressive MS: impact on quality of life. Neurology 2001, 57:1870-1875. 10.1212/WNL.57.10.1870, 11723278.
13. Rudick RA, Miller D, Hass S, Hutchinson M, Calabresi PA, Confavreux C. Health-related quality of life in multiple sclerosis: effects of natalizumab. Ann Neurol 2007, 62:335-346. 10.1002/ana.21163, 17696126.
14. Fox RJ, Miller DH, Phillips JT, Hutchinson M, Havrdova E, Kita M. Placebo-controlled phase 3 study of oral BG-12 or glatiramer in multiple sclerosis. N Engl J Med 2012, 367:1087-1097. 10.1056/NEJMoa1206328, 22992072.
15. Zamboni P, Menegatti E, Galeotti R, Malagoni AM, Tacconi G, Dall'Ara S. The value of cerebral Doppler venous haemodynamics in the assessment of multiple sclerosis. J Neurol Sci 2009, 282:21-27. 10.1016/j.jns.2008.11.027, 19144359.
16. Al-Omari MH, Rousan LA. Internal jugular vein morphology and hemodynamics in patients with multiple sclerosis. Int Angiol 2010, 29:115-120.
17. Baracchini C, Perini P, Calabrese M, Causin F, Rinaldi F, Gallo P. No evidence of chronic cerebrospinal venous insufficiency at multiple sclerosis onset. Ann Neurol 2011, 69:90-99. 10.1002/ana.22228, 21280079.
18. Centonze D, Floris R, Stefanini M, Rossi S, Fabiano S, Castelli M. Proposed chronic cerebrospinal venous insufficiency criteria do not predict multiple sclerosis risk or severity. Ann Neurol 2011, 70:51-58.
19. Zivadinov R, Marr K, Cutter G, Ramanathan M, Benedict RH, Kennedy C. Prevalence, sensitivity, and specificity of chronic cerebrospinal venous insufficiency in MS. Neurology 2011, 77:138-144. 10.1212/WNL.0b013e318212a901, 21490322.
20. The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995, 41:1403-1409.
21. Ware JE. Standards for validating health measures: definition and content. J Chronic Dis 1987, 40:473-480. 10.1016/0021-9681(87)90003-8, 3298292.
22. Breslow L. A quantitative approach to the World Health Organization definition of health: physical, mental and social well-being. Int J Epidemiol 1972, 1:347-355. 10.1093/ije/1.4.347, 4669083.
23. Brazier J, Roberts J, Deverill M. The estimation of a preference-based measure of health from the SF-36. J Health Econ 2002, 21:271-292. 10.1016/S0167-6296(01)00130-8, 11939242.
24. World Health Organization Glossary of Terms Used in the " Health For All" Series 1984, Ref Type: Report, World Health Organization.
25. Kind P. Values and valuation in the measurement of HRQoL. Assessing quality of life in clinical trials 2005, 391-404. New York: Oxford University Press Inc, Fayers P, Hays D, 2.
26. Guyatt GH, Feeny DH, Patrick DL. Measuring health-related quality of life. Ann Intern Med 1993, 118:622-629. 10.7326/0003-4819-118-8-199304150-00009, 8452328.
27. Feeny DH, Torrance GW. Incorporating utility-based quality-of-life assessment measures in clinical trials. Two examples. Med Care 1989, 27:S190-S204. 10.1097/00005650-198903001-00016, 2522159.
28. Torrance GW. Utility approach to measuring health-related quality of life. J Chronic Dis 1987, 40:593-603. 10.1016/0021-9681(87)90019-1, 3298297.
29. Torrance GW. Measurement of health state utilities for economic appraisal. J Health Econ 1986, 5:1-30. 10.1016/0167-6296(86)90020-2, 10311607.
30. Feeny D. Preference-based measures: utility and quality-adjusted life years. Assessing quality of life in clinical trials 2005, 405-429. New York: Oxford University Press Inc, Fayers P, Hays D, 2.
31. Brazier J, Ratcliffe J, Salomon JA, Tsuchiya A. Measuring and valuing health benefits for economic evaluation 2007, New York: Oxford University Press Inc..
32. Kind P, Lafata JE, Matuszewski K, Raisch D. The use of QALYs in clinical and patient decision-making: issues and prospects. Value Health 2009, 12(Suppl 1):S27-S30.
33. Hawthorne G, Richardson J. Measuring the value of program outcomes: a review of multiattribute utility measures. Expert Rev Pharmacoecon Outcomes Res 2001, 1:215-228. 10.1586/14737167.1.2.215, 19807409.
34. Flanagan JC. Measurement of quality of life: current state of the art. Arch Phys Med Rehabil 1982, 63:56-59.
35. Torrance GW, Feeny DH, Furlong WJ, Barr RD, Zhang Y, Wang Q. Multiattribute utility function for a comprehensive health status classification system. Health Utilities Index Mark 2. Med Care 1996, 34:702-722. 10.1097/00005650-199607000-00004, 8676608.
36. Horsman J, Furlong W, Feeny D, Torrance G. The Health Utilities Index (HUI): concepts, measurement properties and applications. Health Qual Life Outcomes 2003, 1:54. 10.1186/1477-7525-1-54, 293474, 14613568.
37. Feeny D, Furlong W, Torrance GW, Goldsmith CH, Zhu Z, DePauw S. Multiattribute and single-attribute utility functions for the health utilities index mark 3 system. Med Care 2002, 40:113-128. 10.1097/00005650-200202000-00006, 11802084.
38. Gudex C. The descriptive system of the EuroQOL instrument. EQ-5D concepts and methods: a developmental history 2005, 19-33. Dordrecht: Springer, Kind P, Brooks R, Rabin R.
39. Brazier J, Usherwood T, Harper R, Thomas K. Deriving a preference-based single index from the UK SF-36 Health Survey. J Clin Epidemiol 1998, 51:1115-1128. 10.1016/S0895-4356(98)00103-6, 9817129.
40. Ahmed S, Mayo NE, Wood-Dauphinee S, Hanley JA, Cohen SR. Using the Patient Generated Index to evaluate response shift post-stroke. Qual Life Res 2005, 14:2247-2257. 10.1007/s11136-005-8118-4, 16328904.
41. Goldstein RS, Gort EH, Stubbing D, Avendano MA, Guyatt GH. Randomised controlled trial of respiratory rehabilitation. Lancet 1994, 344:1394-1397. 10.1016/S0140-6736(94)90568-1, 7968075.
42. Lacasse Y, Wong E, Guatt GH. Individualising questionnaires. Individual quality of life: Approaches to conceptualization and assessment 1999, 87-103. Amsterdam: Harwood Academic Publishers, Joyce CR, O'Boyle CA, McGee H.
43. Simpson K, Killian K, McCartney N, Stubbing DG, Jones NL. Randomised controlled trial of weightlifting exercise in patients with chronic airflow limitation. Thorax 1992, 47:70-75. 10.1136/thx.47.2.70, 463573, 1549826.
44. Wijkstra PJ, Van AR, Kraan J, Otten V, Postma DS, Koeter GH. Quality of life in patients with chronic obstructive pulmonary disease improves after rehabilitation at home. Eur Respir J 1994, 7:269-273. 10.1183/09031936.94.07020269, 8162979.
45. Kettis-Lindblad A, Ring L, Widmark E, Bendtsen P, Glimelius B. Patients' and doctors' views of using the schedule for individual quality of life in clinical practice. J Support Oncol 2007, 5:281-287.
46. Detmar SB, Muller MJ, Schornagel JH, Wever LD, Aaronson NK. Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial. JAMA 2002, 288:3027-3034. 10.1001/jama.288.23.3027, 12479768.
47. Patel KK, Veenstra DL, Patrick DL. A review of selected patient-generated outcome measures and their application in clinical trials. Value Health 2003, 6:595-603. 10.1046/j.1524-4733.2003.65236.x, 14627066.
48. Mayo N. Setting the agenda for multiple sclerosis rehabilitation research. Mult Scler 2008, 14:1154-1156. 10.1177/1352458508096567, 18952830.
49. Ruta DA, Garratt AM, Leng M, Russell IT, MacDonald LM. A new approach to the measurement of quality of life. The Patient-Generated Index. Med Care 1994, 32:1109-1126. 10.1097/00005650-199411000-00004, 7967852.
50. Dolan P. Modeling valuations for EuroQol health states. Med Care 1997, 35:1095-1108. 10.1097/00005650-199711000-00002, 9366889.
51. Shaw JW, Johnson JA, Coons SJ. US valuation of the EQ-5D health states: development and testing of the D1 valuation model. Med Care 2005, 43:203-220. 10.1097/00005650-200503000-00003, 15725977.
52. International Classification of Functioning Disability and Health (ICF) 2001, Geneva: World Health Organization, International Classification of Functioning.
53. Mayo NE, Moriello C, Asano M, van der Spuy S, Finch L. The extent to which common health-related quality of life indices capture constructs beyond symptoms and function. Qual Life Res 2011, 20:621-627. 10.1007/s11136-010-9801-7, 21108008.
54. Krupp LB, Pollina DA. Mechanisms and management of fatigue in progressive neurological disorders. Curr Opin Neurol 1996, 9:456-460. 10.1097/00019052-199612000-00011, 9007405.
55. Fisk JD, Pontefract A, Ritvo PG, Archibald CJ, Murray TJ. The impact of fatigue on patients with multiple sclerosis. Can J Neurol Sci 1994, 21:9-14.
56. Freal JE, Kraft GH, Coryell JK. Symptomatic fatigue in multiple sclerosis. Arch Phys Med Rehabil 1984, 65:135-138.
57. Murray TJ. Amantadine therapy for fatigue in multiple sclerosis. Can J Neurol Sci 1985, 12:251-254.
58. Feeny D, Furlong W, Barr RD, Torrance GW, Rosenbaum P, Weitzman S. A comprehensive multiattribute system for classifying the health status of survivors of childhood cancer. J Clin Oncol 1992, 10:923-928.
59. Feeny D, Furlong W, Boyle M, Torrance GW. Multi-attribute health status classification systems. Health Utilities Index. Pharmacoeconomics 1995, 7:490-502. 10.2165/00019053-199507060-00004, 10155335.
60. Feeny D, Torrance GW, Furlong W. Health utilities index. Quality of Life and Pharmaeconomics in Clinicals Trials 1996, 239-252. Philadelphia: Lippincott-Raven Publishers, Spilker B, 2.
61. Poissant L, Mayo NE, Wood-Dauphinee S, Clarke AE. The development and preliminary validation of a Preference-Based Stroke Index (PBSI). Health Qual Life Outcomes 2003, 1:43. 10.1186/1477-7525-1-43, 222917, 14561225.
62. McKenna SP, Ratcliffe J, Meads DM, Brazier JE. Development and validation of a preference based measure derived from the Cambridge Pulmonary Hypertension Outcome Review (CAMPHOR) for use in cost utility analyses. Health Qual Life Outcomes 2008, 6:65. 10.1186/1477-7525-6-65, 2546377, 18718016.
63. Revicki DA, Leidy NK, Brennan-Diemer F, Sorensen S, Togias A. Integrating patient preferences into health outcomes assessment: the multiattribute Asthma Symptom Utility Index. Chest 1998, 114:998-1007. 10.1378/chest.114.4.998, 9792568.
64. Revicki DA, Leidy NK, Brennan-Diemer F, Thompson C, Togias A. Development and preliminary validation of the multiattribute Rhinitis Symptom Utility Index. Qual Life Res 1998, 7:693-702.
65. Brazier J, Czoski-Murray C, Roberts J, Brown M, Symonds T, Kelleher C. Estimation of a preference-based index from a condition-specific measure: the King's Health Questionnaire. Med Decis Making 2008, 28:113-126.
66. Torrance GW, Keresteci MA, Casey RW, Rosner AJ, Ryan N, Breton MC. Development and initial validation of a new preference-based disease-specific health-related quality of life instrument for erectile function. Qual Life Res 2004, 13:349-359.
67. Versteegh MM, Leunis A, Uyl-de Groot CA, Stolk EA. Condition-specific preference-based measures: benefit or burden?. Value Health 2012, 15:504-513. 10.1016/j.jval.2011.12.003, 22583461.
68. Food US. Drug Administration: Guidance for industry: Patient-reported outcome measures. Use in medical product development to support labeling claims. Fed Regist 2009, 74:65132-65133.
69. Velentgas P, Dreyer NA, Wu AW. Outcome definition and measurement. Developing a Protocol for Observational Comparative Effectiveness Research: A User's Guide. AHRQ Publication No. 12(13)-EHC099 2013, 71-92. Rockville, MD: Agency for Healthcare Research and Quality, Velentgas P, Dreyer NA, Nourjah P.
70. Hays RD. Generic versus disease-targeted instruments. Assessing quality of life in clinical trials 2005, 3-8. New York: Oxford University Press Inc, Fayers P, Hays D, 2.
71. Guyatt GH, Bombardier C, Tugwell PX. Measuring disease-specific quality of life in clinical trials. CMAJ 1986, 134:889-895. 1490966, 3955482.
72. Mayo NE. Randomized trials and other parallel comparisons of treatments. Medical Uses of Statistics 2009, 51-89. Hoboken: John Wiley & Sons, Inc, Bailar JC, Hoaglin DC, 3.
73. Lin FJ, Longworth L, Pickard AS. Evaluation of content on EQ-5D as compared to disease-specific utility measures. Qual Life Res Epub ahead of print.