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

Whitehurst, David GT, Suryaprakash, Nitya, Engel, Lidia, Mittmann, Nicole, Noonan, Vanessa K, Dvorak, Marcel FS and Bryan, Stirling 2014, Perceptions of individuals living with spinal cord injury toward preference-based quality of life instruments: a qualitative exploration, Health and quality of life outcomes, vol. 12, pp. 1-9, doi: 10.1186/1477-7525-12-50.

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Title Perceptions of individuals living with spinal cord injury toward preference-based quality of life instruments: a qualitative exploration
Author(s) Whitehurst, David GT
Suryaprakash, Nitya
Engel, LidiaORCID iD for Engel, Lidia orcid.org/0000-0002-7959-3149
Mittmann, Nicole
Noonan, Vanessa K
Dvorak, Marcel FS
Bryan, Stirling
Journal name Health and quality of life outcomes
Volume number 12
Article ID 50
Start page 1
End page 9
Total pages 9
Publisher BioMed Central
Place of publication London, Eng.
Publication date 2014
ISSN 1477-7525
Keyword(s) Adult
Aged
Female
Focus Groups
Humans
Male
Middle Aged
Patient Preference
Qualitative Research
Quality of Life
Quality-Adjusted Life Years
Spinal Cord Injuries
Surveys and Questionnaires
Treatment Outcome
Young Adult
Summary 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.
Language eng
DOI 10.1186/1477-7525-12-50
Field of Research 111799 Public Health and Health Services not elsewhere classified
1117 Public Health And Health Services
Socio Economic Objective 920499 Public Health (excl. Specific Population Health) not elsewhere classified
HERDC Research category C1.1 Refereed article in a scholarly journal
ERA Research output type C Journal article
Copyright notice ©2014, Whitehurst et al.
Free to Read? Yes
Use Rights Creative Commons Attribution licence
Persistent URL http://hdl.handle.net/10536/DRO/DU:30088465

Document type: Journal Article
Collections: School of Health and Social Development
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Every reasonable effort has been made to ensure that permission has been obtained for items included in DRO. If you believe that your rights have been infringed by this repository, please contact drosupport@deakin.edu.au.