Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada.
Health Qual Life Outcomes. 2014 Apr 14;12:50. doi: 10.1186/1477-7525-12-50.
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).
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.
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.
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.
通用偏好健康相关生活质量量表广泛用于经济评估中测量健康效益。由于存在多种工具，因此人们对它们的相对优点提出了疑问，最近的研究强调了在脊髓损伤（SCI）背景下关于测量特性的证据不足。这项定性研究探讨了患有 SCI 的个体对六种既定工具的看法，目的是确定“首选”的结果测量指标（从研究参与者的角度来看）。
邀请患有 SCI 的个体参加三个焦点小组之一。从温哥华综合医院脊柱计划数据库中确定符合条件的参与者；采用目的性抽样以确保代表不同的人口统计学和损伤特征。征求了对以下问卷的看法和意见：15D、八维度生活质量评估问卷（AQoL-8D）、EQ-5D-5L、健康效用指数（HUI）、自我管理的福利量表（QWB-SA）和 SF-36v2。使用框架分析对讨论过程中收集的定性信息进行分析。使用 NVivo 9 软件对每个问卷的优势和局限性进行主题识别和管理。
主要的新兴主题是（i）总体看法、（ii）全面性、（iii）内容、（iv）措辞和（v）特点。还确定了与内容相关的两个子主题；“问题”和“选项”。所有焦点小组参与者（n=15）认为 AQoL-8D 是在 SCI 人群中最相关的管理工具。该措施被认为是全面的，具有相关的内容（即包括轮椅）和适用的项目。尽管程度不同，但参与者对其他问卷的看法不一。
尽管具有坚实的理论基础，但 AQoL-8D（和其他 AQoL 工具）在其起源国（澳大利亚）以外很少使用。有必要在脊髓损伤背景下对本定性研究中确定的首选工具进行实证比较分析。
