Abstract
BackgroundGeneric 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).MethodsIndividuals 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.ResultsMajor 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.ConclusionsDespite 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.
Highlights
Generic preference-based health-related quality of life instruments are widely used to measure health benefit within economic evaluation
I’ll just say wheeling instead, I don’t mind crossing that off and putting that so that the person who gets it back sees it” (FG2). This qualitative study addressed a narrow research question in relation to the wide-ranging field of economic evaluation, i.e. to what extent do current preference-based health-related quality of life (HRQoL) measures enable individuals living with spinal cord injury (SCI) to describe their health state in a manner deemed appropriate to the individuals themselves? Given the paucity of evidence for the empirical validity of any existing instrument these findings provide an important contribution to the literature, allowing for evidence-based consideration of which instruments are suitable candidates for further empirical investigation
Participants understood the generic objective of the instruments they were asked to discuss as a result of the short explanatory session at the start of each focus group; while a lack of relevance was infrequently viewed with excessive criticism, only the Assessment of Quality of Life (AQoL)-8D and EQ-5D-5L were lauded for being applicable to an SCI population
Summary
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). Valuations for health states can be measured directly from individuals using preference elicitation techniques such as standard gamble or time trade-off, or indirectly through the use of preference-based HRQoL instruments [2]. The latter approach is widely-used due to the availability of general population-based, ‘off the shelf’ values for every possible combination of responses for a particular instrument. There are theoretical and normative arguments for using general population values as opposed to patient values [3,4,5], and national guidelines in multiple jurisdictions require health benefits to be valued in a manner that reflects societal preferences [6,7,8]
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