Perceptions of individuals living with spinal cord injury toward preference-based quality of life instruments: A qualitative exploration

Health and Quality of Life Outcomes

Volumn 12, Issue 1, 2014, Pages

  Whitehurst, David G T ^a,b,c   Suryaprakash, Nitya ^c   Engel, Lidia ^a,c   Mittmann, Nicole ^d,e,f   Noonan, Vanessa K ^g   Dvorak, Marcel F S ^b,g,h   Bryan, Stirling ^c,h  

^a SIMON FRASER UNIVERSITY   (Canada)

^b INTERNATIONAL COLLABORATION ON REPAIR DISCOVERIES   (Canada)

^c VANCOUVER COASTAL HEALTH RESEARCH INSTITUTE   (Canada)

^d SUNNYBROOK RESEARCH INSTITUTE   (Canada)

^e UNIVERSITY OF TORONTO   (Canada)

^f UNIVERSITY OF WESTERN ONTARIO   (Canada)

^g RICK HANSEN INSTITUTE   (Canada)

^h UNIVERSITY OF BRITISH COLUMBIA   (Canada)

Author keywords

Disability; Health related quality of life; Preference based outcomes; Qualitative research; Quality adjusted life years; Spinal cord injury

Indexed keywords

15D; ADULT; ARTICLE; ASSESSMENT OF QUALITY OF LIFE 8 DIMENSION; ATTITUDE TO ILLNESS; CLINICAL ARTICLE; CONTROLLED STUDY; EQ 5D 5L; HEALTH UTILITIES INDEX; HUMAN; INJURY SEVERITY; MALE; NAMED INVENTORIES, QUESTIONNAIRES AND RATING SCALES; OUTCOME ASSESSMENT; PARAPLEGIA; PATIENT PREFERENCE; QUADRIPLEGIA; QUALITATIVE RESEARCH; QUALITY OF LIFE; QUALITY OF WELL-BEING SCALE SELF ADMINISTERED; QUESTIONNAIRE; SELF CARE; SF 36V2; SPINAL CORD INJURY;

ADULT; AGED; FEMALE; FOCUS GROUPS; HUMANS; MALE; MIDDLE AGED; PATIENT PREFERENCE; QUALITATIVE RESEARCH; QUALITY OF LIFE; QUALITY-ADJUSTED LIFE YEARS; QUESTIONNAIRES; SPINAL CORD INJURIES; TREATMENT OUTCOME; YOUNG ADULT;

EID: 84899645624     PISSN: None     EISSN: 14777525     Source Type: Journal    
DOI: 10.1186/1477-7525-12-50     Document Type: Article

References (29)

1. Whitehurst DGT, Mittmann N. The value of health economics research in spinal cord injury. Spinal Cord 2013, 51:586-587. 10.1038/sc.2013.47, 23907495.
2. Neumann P, Goldie SJ, Weinstein MC. Preference-based measures in economic evaluation in health care. Annu Rev Public Health 2000, 21:587-611. 10.1146/annurev.publhealth.21.1.587, 10884966.
3. Brazier J, Akehurst R, Brennan A, Dolan P, Claxton K, McCabe C, Sculpher M, Tsuchyia A. Should patients have a greater role in valuing health states?. Appl Health Econ Health Policy 2005, 4(4):201-208. 10.2165/00148365-200504040-00002, 16466271.
4. McGuire A. Theoretical concepts in the economic evaluation of health care. Economic Evaluation in Health Care: Merging Theory and Practice 2001, 1-21. New York: Oxford University Press, Drummond MF, Maguire A.
5. Torrance GW. Utility measurement in healthcare: the things I never got to. Pharmacoeconomics 2006, 24(11):1069-1078. 10.2165/00019053-200624110-00004, 17067192.
6. Canadian Agency for Drugs and Technologies in Health (CADTH) Guidelines for the Economic Evaluation of Health Technologies: Canada 2006, Ottawa: CADTH, 3, Canadian Agency for Drugs and Technologies in Health (CADTH).
7. Gold M, Siegel J, Russell L, Weinstein M. Cost-Effectiveness in Health and Medicine 1996, New York: Oxford University Press.
8. National Institute for Health and Care Excellence Guide to the Methods of Technology Appraisal 2013 2013, London, UK: National Institute for Health and Care Excellence, National Institute for Health and Care Excellence.
9. Whitehurst DGT, Noonan VK, Dvorak MFS, Bryan S. A review of preference-based health-related quality of life questionnaires in spinal cord injury research. Spinal Cord 2012, 50(9):646-654. 10.1038/sc.2012.46, 22641255.
10. Sintonen H. The 15D instrument of health-related quality of life: properties and applications. Ann Med 2001, 33:328-336. 10.3109/07853890109002086, 11491191.
11. Richardson J, Iezzi A, Khan M, Sinha K, Mihalopoulos C, Herrman H, Hawthorne G, Schweitzer I. Data used in the development of the AQoL-8D (PsyQoL) Quality of Life Instrument (Research Paper #40). http://www.buseco.monash.edu.au/centres/che/pubs/researchpaper40.pdf.
12. Herdman M, Gudex C, Lloyd A, Janssen M, Kind P, Parkin D, Bonsel G, Badia X. Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L). Qual Life Res 2011, 20(10):1727-1736. 10.1007/s11136-011-9903-x, 3220807, 21479777.
13. Furlong WJ, Feeny DH, Torrance GW, Barr RD. The Health Utilities Index (HUI) system for assessing health-related quality of life in clinical studies. Ann Med 2001, 33:375-384. 10.3109/07853890109002092, 11491197.
14. Seiber WJ, Groessl EJ, David KM, Ganiats TG, Kaplan RM. Quality of Well Being Self-Administered (QWB-SA) Scale User's Manual. https://hoap.ucsd.edu/qwb-info/QWB-Manual.pdf.
15. 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.
16. Perreault WD. Controlling order-effect bias. Public Opin Q 1975, 39(4):544-551.
17. Pope C, Ziebland S, Mays N. Qualitative research in health care. Analysing qualitative data. BMJ 2000, 320(7227):114-116. 10.1136/bmj.320.7227.114, 1117368, 10625273.
18. Ritchie J, Spencer L, O'Connor W. Carrying out qualitative analysis. Qualitative research practice: a guide for social science students and researchers 2003, 219-262. London: SAGE Publications, Ritchie J, Lewis J.
19. Andresen EM, Fouts BS, Romeis JC, Brownson CA. Performance of health-related quality-of-life instruments in a spinal cord injured population. Arch Phys Med Rehabil 1999, 80(8):877-884. 10.1016/S0003-9993(99)90077-1, 10453762.
20. Dijkers M. Quality of life of individuals with spinal cord injury: a review of conceptualisation, measurement, and research findings. J Rehabil Res Dev 2005, 42(3 Suppl 1):87-110.
21. Lee BB, Simpson JM, King MT, Haran MJ, Marial O. The SF-36 walk-wheel: a simple modification of the SF-36 physical domain improves its responsiveness for measuring health status change in spinal cord injury. Spinal Cord 2009, 47(1):50-55. 10.1038/sc.2008.65, 18560375.
22. Whitehurst DGT, Bryan S, Lewis M. Systematic review and empirical comparison of contemporaneous EQ-5D and SF-6D group mean scores. Med Decis Making 2011, 31(6):E34-E44.
23. Kitto SC, Chesters J, Grbich C. Quality in qualitative research. Med J Aust 2008, 188(4):243-246.
24. Schoefield JW. Increasing the Generalizability of Qualitative Research. The Qualitative Researcher's Companion 2002, 171-205. California: Sage Publications, Huberman AM, Miles MB.
25. Delmar C. " Generalizability" as recognition: reflections on a foundational problem in qualitative research. Qual Studies 2010, 1(2):115-128.
26. The Assessment of Quality of Life (AQoL) instruments. http://www.aqol.com.au/index.php/aqolinstruments.
27. EQ-5D Products. http://www.euroqol.org/eq-5d-products.html.
28. Brazier JE, Roberts J. The estimation of a preference-based measure of health from the SF-12. Med Care 2004, 42(9):851-859. 10.1097/01.mlr.0000135827.18610.0d, 15319610.
29. Cairns J. Nuffield occasional papers health economics series (Paper No. 7): economic evaluation and health care 1998, London: The Nuffield Trust.