title: Perceptions of individuals living with spinal cord injury toward preference-based quality of life instruments: a qualitative exploration.
abstract: BACKGROUND
  Generic preference-based health-related quality of life instruments are widely used to measure health benefit within economic evaluation. The availability of multiple instruments raises questions about their relative merits and recent studies have highlighted the paucity of evidence regarding measurement properties in the context of spinal cord injury (SCI). This qualitative study explores the views of individuals living with SCI towards six established instruments with the objective of identifying 'preferred' outcome measures (from the perspective of the study participants).
  
  
  METHODS
  Individuals living with SCI were invited to participate in one of three focus groups. Eligible participants were identified from Vancouver General Hospital's Spine Program database; purposive sampling was used to ensure representation of different demographics and injury characteristics. Perceptions and opinions were solicited on the following questionnaires: 15D, Assessment of Quality of Life 8-dimension (AQoL-8D), EQ-5D-5L, Health Utilities Index (HUI), Quality of Well-Being Scale Self-Administered (QWB-SA), and the SF-36v2. Framework analysis was used to analyse the qualitative information gathered during discussion. Strengths and limitations of each questionnaire were thematically identified and managed using NVivo 9 software.
  
  
  RESULTS
  Major emergent themes were (i) general perceptions, (ii) comprehensiveness, (iii) content, (iv) wording and (v) features. Two sub-themes pertinent to content were also identified; 'questions' and 'options'. All focus group participants (n = 15) perceived the AQoL-8D to be the most relevant instrument to administer within the SCI population. This measure was considered to be comprehensive, with relevant content (i.e. wheelchair inclusive) and applicable items. Participants had mixed perceptions about the other questionnaires, albeit to varying degrees.
  
  
  CONCLUSIONS
  Despite a strong theoretical underpinning, the AQoL-8D (and other AQoL instruments) is infrequently used outside its country of origin (Australia). Empirical comparative analyses of the favoured instruments identified in this qualitative study are necessary within the context of spinal cord injury.
authors.affiliation: Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada. david_whitehurst@sfu.ca.
authors.forename: David G T
authors.initials: DG
authors.lastname: Whitehurst
authors.forename: Nitya
authors.initials: N
authors.lastname: Suryaprakash
authors.forename: Lidia
authors.initials: L
authors.lastname: Engel
authors.forename: Nicole
authors.initials: N
authors.lastname: Mittmann
authors.forename: Vanessa K
authors.initials: VK
authors.lastname: Noonan
authors.forename: Marcel F S
authors.initials: MF
authors.lastname: Dvorak
authors.forename: Stirling
authors.initials: S
authors.lastname: Bryan
mesh_terms: D000328:Adult; D000368:Aged; D005260:Female; D017144:Focus Groups; D006801:Humans; D008297:Male; D008875:Middle Aged; D057240:Patient Preference / Q000523:psychology*; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D019057:Quality-Adjusted Life Years; D013119:Spinal Cord Injuries / Q000523:psychology*; D011795:Surveys and Questionnaires; D016896:Treatment Outcome; D055815:Young Adult
references.citation: Pharmacoeconomics. 2006;24(11):1069-78
references.pmid: 17067192
references.citation: Med J Aust. 2008 Feb 18;188(4):243-6
references.pmid: 18279135
references.citation: Qual Life Res. 2011 Dec;20(10):1727-36
references.pmid: 21479777
references.citation: BMJ. 2000 Jan 8;320(7227):114-6
references.pmid: 10625273
references.citation: Spinal Cord. 2009 Jan;47(1):50-5
references.pmid: 18560375
references.citation: Med Care. 2004 Sep;42(9):851-9
references.pmid: 15319610
references.citation: Ann Med. 2001 Jul;33(5):328-36
references.pmid: 11491191
references.citation: Spinal Cord. 2012 Sep;50(9):646-54
references.pmid: 22641255
references.citation: Arch Phys Med Rehabil. 1999 Aug;80(8):877-84
references.pmid: 10453762
references.citation: Spinal Cord. 2013 Aug;51(8):586-7
references.pmid: 23907495
references.citation: Med Decis Making. 2011 Nov-Dec;31(6):E34-44
references.pmid: 21993430
references.citation: Ann Med. 2001 Jul;33(5):375-84
references.pmid: 11491197
references.citation: J Rehabil Res Dev. 2005 May-Jun;42(3 Suppl 1):87-110
references.pmid: 16195966
references.citation: Appl Health Econ Health Policy. 2005;4(4):201-8
references.pmid: 16466271
references.citation: Annu Rev Public Health. 2000;21:587-611
references.pmid: 10884966
references.citation: J Health Econ. 2002 Mar;21(2):271-92
references.pmid: 11939242