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

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.

"When I saw walking I just kind of took it as wheeling": interpretations of mobility-related items in generic, preference-based health state instruments in the context of spinal cord injury

Background : In health economic analyses, health states are typically valued using instruments with few items per dimension. Due to the generic (and often reductionist) nature of such instruments, certain groups of respondents may experience challenges in describing their health state. This study is concerned with generic, preference-based health state instruments that provide information for decisions about the allocation of resources in health care. Unlike physical measurement instruments, preference-based health state instruments provide health state values that are dependent on how respondents interpret the items. This study investigates how individuals with spinal cord injury (SCI) interpret mobility-related items contained within six preference-based health state instruments.

Methods : Secondary analysis of focus group transcripts originally collected in Vancouver, Canada, explored individuals’ perceptions and interpretations of mobility-related items contained within the 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 36-item Short Form health survey version 2 (SF-36v2). Ritchie and Spencer’s ‘Framework Approach’ was used to perform thematic analysis that focused on participants’ comments concerning the mobility-related items only.

Results : Fifteen individuals participated in three focus groups (five per focus group). Four themes emerged: wording of mobility (e.g., ‘getting around’ vs ‘walking’), reference to aids and appliances, lack of suitable response options, and reframing of items (e.g., replacing ‘walking’ with ‘wheeling’). These themes reflected item features that respondents perceived as relevant in enabling them to describe their mobility, and response strategies that respondents could use when faced with inaccessible items.

Conclusion : Investigating perceptions to mobility-related items within the context of SCI highlights substantial variation in item interpretation across six preference-based health state instruments. Studying respondents’ interpretations of items can help to understand discrepancies in the health state descriptions and values obtained from different instruments. This line of research warrants closer attention in the health economics and quality of life literature.

PowerSource

Santee Cooper publishes PowerSource, a corporate quarterly magazine that profiles the many ways Santee Cooper and employees work to full the mission of improving the quality of life for South Carolinians.

The water wellspring

The South Carolina Office of Regulatory Staff publishes The Water Wellspring, a newsletter for water and wastewater utilities with agency program and service information.

The water wellspring

The South Carolina Office of Regulatory Staff publishes The Water Wellspring, a newsletter for water and wastewater utilities with agency program and service information.

The water wellspring

The South Carolina Office of Regulatory Staff publishes The Water Wellspring, a newsletter for water and wastewater utilities with agency program and service information.

The water wellspring

The South Carolina Office of Regulatory Staff publishes The Water Wellspring, a newsletter for water and wastewater utilities with agency program and service information.

The water wellspring

The South Carolina Office of Regulatory Staff publishes The Water Wellspring, a newsletter for water and wastewater utilities with agency program and service information.

The water wellspring

The South Carolina Office of Regulatory Staff publishes The Water Wellspring, a newsletter for water and wastewater utilities with agency program and service information.

The water wellspring

The South Carolina Office of Regulatory Staff publishes The Water Wellspring, a newsletter for water and wastewater utilities with agency program and service information.

The water wellspring

The South Carolina Office of Regulatory Staff publishes The Water Wellspring, a newsletter for water and wastewater utilities with agency program and service information.

The water wellspring

The South Carolina Office of Regulatory Staff publishes The Water Wellspring, a newsletter for water and wastewater utilities with agency program and service information.

The water wellspring

The South Carolina Office of Regulatory Staff publishes The Water Wellspring, a newsletter for water and wastewater utilities with agency program and service information.

The water wellspring

The South Carolina Office of Regulatory Staff publishes The Water Wellspring, a newsletter for water and wastewater utilities with agency program and service information.

The water wellspring

The South Carolina Office of Regulatory Staff publishes The Water Wellspring, a newsletter for water and wastewater utilities with agency program and service information.