Assessment Of Quality Of Life-8 Dimensions Research Articles

Outcomes of Cochlear Implantation Using FLEX26 Electrode: Audiological Results and Quality of Life after 12 Months

Introduction: The electrode length is one of the many factors impacted on results of cochlear implantation. Among lateral wall flexible electrode arrays the latest one is FLEX26 (MED-EL GmbH, Innsbruck, Austria). The main aim of the study was to evaluate the preservation of residual hearing, the level of speech understanding, and quality of life after cochlear implantation with FLEX26 electrode array. Methods: The study was conducted in a tertiary referral centre. Fifty-two patients implanted unilaterally with FLEX26, including 10 EAS patients (electric acoustic stimulation) and 42 ES patients (electric stimulation). The intervention was minimally invasive cochlear implantation via the round window. Pure-tone audiometry (0.125–8 kHz) was performed preoperatively and at 1, 6, and 12 months postoperatively. Twelve-month hearing preservation was established using HEARRING group formula. Quality of life was measured with AQoL-8D (Assessment of Quality of Life–8 Dimensions) pre- and postoperatively. Results: Residual hearing was preserved in 88.8% EAS patients. Quality of life was significantly better postoperatively in comparison to preoperative period (the effect size for overall quality of life was 0.49). Especially, it increased in relationships and senses dimensions (the effect sizes 0.47 and 0.44, respectively). Conclusion: Preservation of residual hearing can be achieved in the majority of patients implanted with FLEX26. Improvement of quality of life was also documented. FLEX26 seems to be an option for surgeons who seek an electrode providing sufficient cochlear coverage.

The relative contribution of co-morbidities to health-related quality of life of people with idiopathic pulmonary fibrosis using the Assessment of Quality of Life-8-Dimension multi-attribute utility instrument.

Little is known about the impact of co-morbidities on health-related quality of life (HRQoL) for people with idiopathic pulmonary fibrosis (IPF). We aimed to investigate the relative contribution of co-morbidities to HRQoL of people with IPF. N = 157 participants were recruited from the Australian IPF Registry (AIPFR). Health state utilities (HSUs), and the super-dimensions of physical and psychosocial scores were measured using the Assessment of Quality of Life-8-Dimensions (AQoL-8D). The impact of co-morbidities on HRQoL was investigated using linear regression and general dominance analyses. A higher number of co-morbidities was associated with lower HSUs (p trend = 0.002). Co-morbidities explained 9.1% of the variance of HSUs, 16.0% of physical super-dimensional scores, and 4.2% of psychosocial super-dimensional scores. Arthritis was associated with a significant reduction on HSUs (β = - 0.09, 95% confidence interval [CI] - 0.16 to - 0.02), largely driven by reduced scores on the physical super-dimension (β = - 0.13, 95% CI - 0.20 to - 0.06). Heart diseases were associated with a significant reduction on HSUs (β = - 0.09, 95% CI - 0.16 to - 0.02), driven by reduced scores on physical (β = - 0.09, 95% CI - 0.16 to - 0.02) and psychosocial (β = -0.10, 95% CI - 0.17 to - 0.02) super-dimensions. Co-morbidities significantly impact HRQoL of people with IPF, with markedly negative impacts on their HSUs and physical health. A more holistic approach to the care of people with IPF is important as better management of these co-morbidities could lead to improved HRQoL in people with IPF.

Patient-Reported Health-Related Quality of Life in Individuals with Inherited Retinal Diseases.

PurposeTo evaluate the impact of inherited retinal diseases (IRDs) on quality of life (QoL) using multiattributable health utilities derived from primary patient data.DesignCross-sectional observational study.ParticipantsSeventy adult patients (mean age, 42.7 years) with IRD recruited from state-wide services in Australia.MethodsHealth utility values were calculated from the Assessment of Quality of Life 8-Dimension (AQoL-8D). Linear regressions were used to analyze the relationship between the 25-item and 39-item National Eye Institute Visual Function Questionnaires (NEI-VFQ-25 and NEI-VFQ-39, respectively) and health utilities from the AQoL-8D.Main Outcome MeasuresThe AQoL-8D utility values were compared between the IRD cohort and population norms. Regressions were used to determine explanatory power of the NEI-VFQ-25 and NEI-VFQ-39 for health utilities from the AQoL-8D.ResultsAverage health-related utility for patients with IRD was 0.58, significantly lower than population norms of 0.80. The IRD patient scores were significantly lower than population norms for all 8 domains of the AQoL-8D. Regressions showed a statistically significant relationship between the NEI-VFQ-39 and AQoL-8D, with the NEI-VFQ-39 and other clinical data explaining up to 73% of the variation in AQoL-8D values and 69% of the variation in the NEI-VFQ-25 values.ConclusionsPatients with IRD have significantly lower utility values across all dimensions of QoL, with the largest differences in independent living, senses, and relationships. The NEI-VFQ-25 and NEI-VFQ-39 are highly correlated with overall AQoL-8D utilities and, combined with other data, can reasonably estimate QoL utilities required for cost-effectiveness studies.

Age-Related Hearing Loss With Tinnitus and Physical Frailty Influence the Overall and Domain-Specific Quality of Life of Chinese Community-Dwelling Older Adults.

Objective: To investigate the impact of the severity of age-related hearing loss (ARHL) and tinnitus, presence of ARHL and/or tinnitus, and physical frailty on the health-related quality of life (HRQoL) and domain-specific HRQoL in Chinese community-dwelling older adults.Design: This was a cross-sectional study of a community-based cohort.Participants: We evaluated Chinese older adults (n = 429, 183 men and 246 women) aged ≥ 58years.Measurements: The severity of HL and tinnitus were measured using pure-tone audiometry and the Tinnitus Handicap Inventory (THI), respectively. Physical frailty was measured using the five-item Fried scale. HRQoL was assessed using the Assessment of Quality of Life-8-Dimension (AQoL-8D) multi-attribute utility instrument (35 HRQoL items and eight domain-specific HRQoL subcategories). Low HRQoL (HRQoL score or subscores in the highest quintile) was used as a dependent variable in logistic regression analyses adjusted for demographic (Model 1) and health-related (Model 2) and psychosocial (Model 3) confounders.Results: Age-related hearing loss severity was an independent determinant of senses in the physical dimension of HRQoL after adjusting for all covariates. Tinnitus severity was significantly associated with HRQoL and with independent living, senses, and pain in the physical dimension after adjusting for demographic and health-related covariates and was still associated with independent living and senses after adjusting for all covariates. The presence of ARHL and/or tinnitus was significantly associated with independent living and senses in the physical dimension after adjusting for all the covariates. Physical frailty was an independent determinant of HRQoL, independent living, and pain in the physical dimension and with mental health, happiness, and coping in the psychosocial dimension after adjusting for demographic and health-related covariates. The association with HRQoL, independent living, and pain in the physical dimension, and with happiness and coping in the psychosocial dimension remained significant after adjusting for the covariates. Depressive symptoms, social dysfunction, and a number of comorbidities were critical determinants of psychosocial HRQoL.Conclusion: Physical frailty has a stronger and more profound effect on HRQoL, particularly on independent living and pain in the physical dimension and on happiness and coping in the psychosocial dimension. Domain-specific HRQoL should be considered in the management of patients with ARHL with tinnitus and physical frailty.Clinical Trial Registration: www.ClinicalTrials.gov, identifier: NCT2017K020.

Assessment of Quality of Life 8-Dimension (AQoL-8D): translation, validation, and application in two Dutch trials in patients with epilepsy and schizophrenia

ABSTRACT Background To translate and linguistically validate the Assessment of Quality of Life 8-dimensions (AQoL-8D) for use in the Netherlands and to compare the psychometric properties of AQoL-8D with the EuroQol 5-dimensions 5-levels (EQ-5D-5L) in two patient samples. Methods AQoL-8D was translated from English into Dutch. The translated AQoL-8D was then administered alongside the EQ-5D-5L at baseline and follow-up of two Dutch randomized controlled trials among patients with epilepsy and schizophrenia. These data were subjected to a post-hoc analysis assessing the psychometric properties of AQol-8D vis-à-vis EQ-5D-5L in terms of known-groups construct validity, responsiveness, and floor/ceiling effects. Results In total, 103 epilepsy patients and 99 schizophrenia patients were included in this study. In both datasets, the two instruments discriminated between known-groups, but in schizophrenia, AQoL-8D showed higher responsiveness than EQ-5D-5L, while both instruments showed equal responsiveness in epilepsy. Ceiling effects were only found for EQ-5D-5L in both epilepsy (26.6%) and schizophrenia (6.1%). Conclusion Our results have shown that, among other things, AQoL-8D presents better ability to discriminate between known-groups and shows no ceiling effect. Based on our results, we would recommend the use of AQoL-8D in addition to EQ-5D-5L in trials assessing patient’s quality of life in patients with epilepsy or schizophrenia.

Estimating the relative contribution of comorbidities in predicting health-related quality of life of people with multiple sclerosis

Little is known about the relative contribution of comorbidities in predicting the health-related quality of life (HRQoL) of people with Multiple Sclerosis (PwMS). To determine the associations between the number of and individual comorbidities and HRQoL and estimate the relative contribution of different comorbidities on HRQoL. Cross-sectional analysis of data on self-reported presence of 30 comorbidities and HRQoL from the Australian MS Longitudinal Study (AMSLS) participants (n = 902). HRQoL was measured using the Assessment of Quality of Life-8 Dimensions (AQoL-8D). Linear regression and general dominance analysis were used. Higher number of comorbidities was associated with lower HRQoL (p trend p < 0.01). Comorbidities accounted for 18.1% of the variance in HRQoL. Mental health and musculoskeletal disorders were the strongest contributors to lower HRQoL. Of individual comorbidities, systemic lupus erythematosus (SLE) [β = -0.16 (-0.27, -0.05)] and depression [β = -0.15(-0.18, -0.13)] were most strongly associated with overall HRQoL, depression [β = -0.14(-0.16, -0.11)] and anxiety [β = -0.10 (-0.13, -0.07)] with psychosocial HRQoL, and SLE [β = -0.18 (-0.29, -0.07)], rheumatoid arthritis [β = -0.11 (-0.19, -0.02)] and hyperthyroidism [β = -0.11 (-0.19, -0.03)) with physical HRQoL. Comorbidities potentially make important contributions to HRQoL in PwMS. Our findings highlight groups of and individual comorbidities that could provide the largest benefits for the HRQoL of PwMS if they were targeted for prevention, early detection, and optimal treatment.

"It's Feasible to Write a Song": A Feasibility Study Examining Group Therapeutic Songwriting for People Living With Dementia and Their Family Caregivers.

BackgroundPsychosocial interventions for people with dementia and their family caregivers together may sustain relationship quality and social connection. No previous music therapy research has examined the effects of group therapeutic songwriting (TSW) attended by people with dementia/family caregiver dyads.MethodsThis pre–post feasibility study aimed to examine the acceptability of a group TSW intervention for people with dementia/family caregiver dyads and test the sensitivity of the following outcomes: Quality of the Caregiver–Patient Relationship (QCPR, primary); Cornell Scale for Depression in Dementia (CSDD) and Quality of Life–Alzheimer’s Dementia for people with dementia, Patient Health Questionnaire-9, Assessment of Quality of Life–8 Dimensions (AQoL-8D); and Zarit Burden Interview for family caregivers. Six weekly 1 h sessions guided participants to identify preferred music, brainstorm ideas, create lyrics, and record songs. Qualitative interviews were conducted with dyads who completed the intervention.ResultsFourteen dyads were recruited and completed baseline assessments. Participants with dementia were aged 62–92 years (M = 77, SD = 11). Caregiver participants (11 spouses, two daughters, one son) were aged 54–92 years (M = 67, SD = 10.1). Four dyads withdrew owing to declining health or inconvenience before the program commenced (n = 2) and after attending 1–2 sessions (n = 2). Ten dyads formed four homogeneous TSW groups (71% completion). No statistically significant changes were detected for any measure. High QCPR ratings at baseline (M = 57.1) and follow-up (M = 57.4) demonstrated sustained relationship quality. For participants with dementia, large effect sizes for the CSDD suggested trends toward decreased depression (d = -0.83) and improved mood (d = -0.88). For family caregivers, a large effect size suggested a trend toward improvement for the AQoL-8D sub-domain examining independent living (d = -0.93). Qualitative data indicated that session design and delivery were acceptable, and TSW was a positive shared experience with personal benefits, which supported rather than changed relationship quality.ConclusionHigh retention and qualitative data indicate that TSW was well received by participants. Effect sizes suggest that group TSW for dyads may have beneficial impacts on depression for people with dementia and quality of life for family caregivers. Future research with a fully powered sample is recommended to further examine the psychosocial impacts of group TSW for people living with dementia/family caregiver dyads.

Measuring the health-related quality of life in Australians with multiple sclerosis using the assessment of quality of life-8-dimension (AQoL-8D) multi-attribute utility instrument

BackgroundHealth-related quality of life (HRQoL) has not been assessed in Australians with multiple sclerosis (MS) using a preferentially sensitive multi-attribute utility instrument. ObjectivesTo assess HRQoL and to quantify the impact of disability on health state utility values (HSUVs), and the physical and psychosocial health of people with MS using the Assessment of Quality of Life-8-Dimension (AQoL-8D) instrument. MethodsWe estimated HSUVs and the unique composite individual and super dimensional (physical and psychosocial) scores of the AQoL-8D for a large, representative sample (n=1,577) of Australians with MS. The estimates were compared to Australian general population norms and broken down by disability severity, classified as no disability (Expanded Disability Status Scale [EDSS] level: 0), mild (EDSS: 1-3.5), moderate (EDSS: 4-6) and severe (EDSS: 6.5-9.5). A multivariable regression model adjusted the association between MS disability severity and HSUVs for age, sex, MS onset type, DMTs usage status, and MS duration. Results: Mean overall HSUV at 0.61 (95% confidence interval [CI]: 0.60-0.62) was 0.18 units lower than the Australian population norm. HSUV decreased with increasing disability severity: 0.81 (95% CI: 0.80-0.83), 0.65 (95% CI: 0.63-0.67), 0.54 (95% CI: 0.52-0.56) and 0.48 (95% CI: 0.46-0.50) for no, mild, moderate and severe disability, respectively. The mean Physical super-dimension score of 0.57 (95% CI: 56-0.58) was 0.21 units lower than the Australian norm and the Psychosocial super-dimension of 0.33(95% CI: 32-0.34) was 0.16 units lower. Lower HRQoL was primarily driven by reduced scores on Independent living (-0.23), Pain (-0.15), Relationships (-0.13), Coping (-0.12), and Self-worth (-0.12). ConclusionsMS impacts all aspects of HRQoL. Effective pain management and support to maintain independent living, relationships, and self-worth can significantly improve the HRQoL of people with MS. Early diagnosis and affordable access to effective treatments to slow or prevent disability accumulation may also be helpful.

Exploring health state utility values of parents of children with a serious illness.

In cost-utility analysis, outcomes are usually measured in terms of quality-adjusted life years, where length of life is adjusted by levels of health-related quality of life (HRQoL) using a single value, known as a health state utility value (HSUV). This study explores the HSUVs of parents of children with a serious illness admitted within three hospital departments (cardiology, oncology and paediatric intensive care) across four time points, compares HSUVs with Australian population norms and examines predictors of parental HSUVs. Data were obtained from the Take a Breath study, where parental HSUVs were measured using the Assessment of Quality of Life-8 Dimensions (AQoL-8D). Descriptive statistics and t-tests compared the AQoL-8D scores with population norms, while repeated measures ANOVA was used to compare parental HSUVs of children treated across illness groups over time. Regression analysis was performed to determine predictors of parental HSUVs. Parental HSUVs were not significantly different from the general Australian population norms (p = 0.939), as measured by the AQoL-8D. However, statistically significant differences were observed in the psychosocial super-dimension (p < 0.01) and in all eight AQoL-8D dimensions, except for senses and self-worth. No significant differences were observed across illness groups. Parental HSUVs were associated with psychosocial risk factors of trait anxiety (p < 0.001), depression (p < 0.001) and family beliefs (p = 0.024). Having a child with a severe illness has an impact on the psychosocial aspects of parental HRQoL regardless of the type of illness. Psychosocial health factors of trait anxiety, depression and family beliefs were important predictors of parental HSUV.

A Review of the Development and Application of Generic Preference-Based Instruments with the Older Population.

Older people (aged 65years and over) are the fastest growing age cohort in the majority of developed countries, and the proportion of individuals defined as the oldest old (aged 80years and over) living with physical frailty and cognitive impairment is rising. These population changes put increasing pressure on health and aged care services, thus it is important to assess the cost effectiveness of interventions targeted for older people across health and aged care sectors to identify interventions with the strongest capacity to enhance older peoples' quality of life and provide value for money. Cost-utility analysis (CUA) is a form of economic evaluation that typically uses preference-based instruments to measure and value health-related quality of life for the calculation of quality-adjusted life-years (QALYS) to enable comparisons of the cost effectiveness of different interventions. A variety of generic preference-based instruments have been used to measure older people's quality of life, including the Adult Social Care Outcomes Toolkit (ASCOT); Health Utility Index Mark 2 (HUI2); Health Utility Index Mark 3 (HUI3); Short-Form-6 Dimensions (SF-6D); Assessment of Quality of Life-6 dimensions (AQoL-6D); Assessment of Quality of Life-8 dimensions (AQoL-8D); Quality of Wellbeing Scale-Self-Administered (QWB-SA); 15 Dimensions (15D); EuroQol-5 dimensions (EQ-5D); and an older person specific preference-based instrument-the Investigating Choice Experiments Capability Measure for older people (ICECAP-O). This article reviews the development and application of these instruments within the older population and discusses the issues surrounding their use with this population. Areas for further research relating to the development and application of generic preference-based instruments with populations of older people are also highlighted.

Cost-Effectiveness of a Psycho-Educational Intervention Targeting Fear of Cancer Recurrence in People Treated for Early-Stage Melanoma.

This study aimed to evaluate the cost effectiveness of a newly developed psycho-educational intervention to reduce fear of cancer recurrence (FCR) in early-stage melanoma patients. A within-trial cost-effectiveness and cost-utility analysis was conducted from the Australian health system perspective using data from linked Medicare records. Outcomes included FCR, measured with the severity subscale of the FCR Inventory; quality-adjusted life years (QALYs) measured using the preference-based instrument, Assessment of Quality of Life-8 Dimensions (AQoL-8D) and 12-month survival. An incremental cost-effectiveness ratio (ICER) was calculated for two economic outcomes: (1) cost per additional case of 'high' FCR avoided and (2) cost per QALY gained. Means and 95% CIs around the ICER were generated from non-parametric bootstrapping with 1000 replications. A total of 151 trial participants were included in the economic evaluation. The mean cost of the psycho-educational intervention was AU$1614 per participant, including intervention development costs. The ICER per case of high FCR avoided was AU$12,903. The cost-effectiveness acceptability curve demonstrated a 78% probability of the intervention being cost effective relative to the control at a threshold of AU$50,000 per extra person avoiding FCR. The ICER per QALY gained was AU$116,126 and the probability of the intervention being cost effective for this outcome was 36% at a willingness to pay of AU$50,000 per QALY. The psycho-educational intervention reduced FCR at 12months for people at high risk of developing another melanoma and may represent good value for money. For the QALY outcome, the psycho-educational intervention is unlikely to be cost effective at standard government willingness-to-pay levels. The trial was prospectively registered in the Australian and New Zealand Clinical Trials Registry (CTRN12613000304730).

Using path analysis to investigate the relationships between standardized instruments that measure health-related quality of life, capability wellbeing and subjective wellbeing: An application in the context of spinal cord injury

While economic evaluations typically embrace health maximization as the maximization objective using quality-adjusted life years, there is increasing interest in the measurement of capability wellbeing and subjective wellbeing (SWB) for informing policy decisions. The objective of this study was to investigate the relationships between health-related quality of life (HRQoL), capability wellbeing and SWB. Data were used from 364 individuals living with spinal cord injury (SCI) who previously completed a web-based, cross-sectional survey (March–June 2013). Regression analyses were used to study the impacts of secondary health conditions on HRQoL, capability wellbeing and SWB; subsequently, a path analysis was used to assess direct and mediated pathways. HRQoL was measured using the EQ-5D-5L and the Assessment of Quality of Life 8-dimension (AQoL-8D) questionnaire; capability wellbeing was assessed using the ICEpop CAPability measure for Adults (ICECAP-A), and SWB was based on a single life satisfaction item (0–10 rating scale). Mean scores were 0.492, 0.573, 0.761 and 6.319 for EQ-5D-5L, AQoL-8D, ICECAP-A and SWB, respectively. Beta coefficients from the regression analyses indicated that secondary health conditions had the greatest negative impact on individuals' HRQoL (βAQoL-8D = −0.668, βEQ-5D-5L = −0.542), followed by SWB (βSWB = −0.481) and capability wellbeing (βICECAP-A = −0.477). Capability wellbeing mediated the effect of secondary health conditions on HRQoL and SWB. The indirect effect of secondary health conditions on SWB through HRQoL was not statistically significant when using EQ-5D-5L; indirect effects were found when using AQoL-8D, one through HRQoL only and one through both capability wellbeing and HRQoL. This study highlights the different impacts of secondary health conditions on HRQoL, capability and SWB in the context of SCI. While the greatest impact was observed on individuals' HRQoL, our results provide further evidence that capability wellbeing (here, the ICECAP-A) adds complementary information about outcomes that could be used in economic evaluation.

An Investigation of the Overlap Between the ICECAP-A and Five Preference-Based Health-Related Quality of Life Instruments.

The ICEpop CAPability measure for Adults (ICECAP-A) is a measure of capability wellbeing developed for use in economic evaluations. It was designed to overcome perceived limitations associated with existing preference-based instruments, where the explicit focus on health-related aspects of quality of life may result in the failure to capture fully the broader benefits of interventions and treatments that go beyond health. The aim of this study was to investigate the extent to which preference-based health-related quality of life (HRQoL) instruments are able to capture aspects of capability wellbeing, as measured by the ICECAP-A. Using data from the Multi Instrument Comparison project, pairwise exploratory factor analyses were conducted to compare the ICECAP-A with five preference-based HRQoL instruments [15D, Assessment of Quality of Life 8-dimension (AQoL-8D), EQ-5D-5L, Health Utilities Index Mark 3 (HUI-3), and SF-6D]. Data from 6756 individuals were used in the analyses. The ICECAP-A provides information above that garnered from most commonly used preference-based HRQoL instruments. The exception was the AQoL-8D; more common factors were identified between the ICECAP-A and AQoL-8D compared with the other pairwise analyses. Further investigations are needed to explore the extent and potential implications of 'double counting' when applying the ICECAP-A alongside health-related preference-based instruments.

Framing of mobility items: a source of poor agreement between preference-based health-related quality of life instruments in a population of individuals receiving assisted ventilation.

To explore the influence of descriptive differences in items evaluating mobility on index scores generated from two generic preference-based health-related quality of life (HRQoL) instruments. The study examined cross-sectional data from a postal survey of individuals receiving assisted ventilation in two state/province-wide home mechanical ventilation services, one in British Columbia, Canada and the other in Victoria, Australia. The Assessment of Quality of Life 8-dimension (AQoL-8D) and the EQ-5D-5L were included in the data collection. Graphical illustrations, descriptive statistics, and measures of agreement [intraclass correlation coefficients (ICCs) and Bland-Altman plots] were examined using index scores derived from both instruments. Analyses were performed on the full sample as well as subgroups defined according to respondents' self-reported ability to walk. Of 868 individuals receiving assisted ventilation, 481 (55.4%) completed the questionnaire. Mean index scores were 0.581 (AQoL-8D) and 0.566 (EQ-5D-5L) with 'moderate' agreement demonstrated between the two instruments (ICC = 0.642). One hundred fifty-nine (33.1%) reported level 5 ('I am unable to walk about') on the EQ-5D-5L Mobility item. The walking status of respondents had a marked influence on the comparability of index scores, with a larger mean difference (0.206) and 'slight' agreement (ICC = 0.386) observed when the non-ambulant subgroup was evaluated separately. This study provides further evidence that between-measure discrepancies between preference-based HRQoL instruments are related in part to the framing of mobility-related items. Longitudinal studies are necessary to determine the responsiveness of preference-based HRQoL instruments in cohorts that include non-ambulant individuals.

"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.

BackgroundIn 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.MethodsSecondary 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.ResultsFifteen 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.ConclusionInvestigating 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.

Protocol for a within-trial economic evaluation of a psychoeducational intervention tailored to people at high risk of developing a second or subsequent melanoma.

IntroductionPsychological support programmes are not currently funded for people with a history of melanoma. A major barrier to the implementation of effective psychological interventions in routine clinical care is a lack of cost-effectiveness data. This paper describes the planned economic evaluation alongside a randomised controlled trial of a psychoeducational intervention for people with a history of melanoma who are at high risk of developing new primary disease.Method and analysisThe economic evaluation is a within-trial analysis to evaluate the incremental costs and health outcomes of a psychoeducational intervention compared to usual care from the perspective of the Australian healthcare system. Cost-effectiveness and cost-utility analyses will be conducted, providing estimates of the cost to reduce fear of melanoma recurrence and the cost per quality-adjusted life-year (QALY) gained. Fear of melanoma recurrence will be measured using the Fear of Cancer Recurrence Inventory and preference-based quality of life measured using the Assessment of Quality of Life—8 Dimensions (AQoL-8D) instrument. The AQoL-8D will provide utilities for estimation of QALYs in the cost-utility analysis. Unit costs of health services and medicines will be taken from the Medicare Benefits Schedule and the Pharmaceutical Benefits Scheme national databases. Health outcomes, and health service and medication use will be collected at baseline, 6 and 12 months follow-up. The within-trial analysis will be conducted at 12 months, consistent with the end point of the trial.Ethics and disseminationApproval to conduct the study was granted by the Sydney Local Health District (RPAH zone) Ethics Review Committee (X13-0065 and HREC/13/RPAH/86), the Department of Health and Ageing Human Research Ethics Committee (21/2013), the University of Sydney Human Research Ethics Committee (2013/595), and the Australian Institute of Health and Welfare Ethics Committee (EO 2013/4/58).Trial registration numberACTRN12613000304730; Pre-results.

Mapping Between the Sydney Asthma Quality of Life Questionnaire (AQLQ-S) and Five Multi-Attribute Utility Instruments (MAUIs).

Economic evaluation of health services commonly requires information regarding health-state utilities. Sometimes this information is not available but non-utility measures of quality of life may have been collected from which the required utilities can be estimated. This paper examines the possibility of mapping a non-utility-based outcome, the Sydney Asthma Quality of Life Questionnaire (AQLQ-S), onto five multi-attribute utility instruments: Assessment of Quality of Life 8 Dimensions (AQoL-8D), EuroQoL 5 Dimensions 5-Level (EQ-5D-5L), Health Utilities Index Mark 3 (HUI3), 15 Dimensions (15D), and the Short-Form 6 Dimensions (SF-6D). Data for 856 individuals with asthma were obtained from a large Multi-Instrument Comparison (MIC) survey. Four statistical techniques were employed to estimate utilities from the AQLQ-S. The predictive accuracy of 180 regression models was assessed using six criteria: mean absolute error (MAE), root mean squared error (RMSE), correlation, distribution of predicted utilities, distribution of residuals, and proportion of predictions with absolute errors <0.0.5. Validation of initial 'primary' models was carried out on a random sample of the MIC data. Best results were obtained with non-linear models that included a quadratic term for the AQLQ-S score along with demographic variables. The four statistical techniques predicted models that performed differently when assessed by the six criteria; however, the best results, for both the estimation and validation samples, were obtained using a generalised linear model (GLM estimator). It is possible to predict valid utilities from the AQLQ-S using regression methods. We recommend GLM models for this exercise.

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

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.

Relationship between disease severity and quality of life and assessment of health care utilization and cost for ulcerative colitis in Australia: A cross-sectional, observational study

Background & aimsThe burden of ulcerative colitis (UC) in relation to disease severity is not well documented. This study quantitatively evaluated the relationship between disease activity and quality of life (QoL), as well as health care utilization, cost, and work-related impairment associated with UC in an Australian population. MethodsA cross-sectional, noninterventional, observational study was performed in patients with a wide range of disease severity recruited during routine specialist consultations. Evaluations included the Assessment of Quality of Life–8-dimension (AQoL-8D), EuroQol 5-dimension, 5-level (EQ-5D-5L), the disease-specific Inflammatory Bowel Disease Questionnaire (IBDQ), and the Work Productivity and Activity Impairment (WPAI) instrument. The 3-item Partial Mayo Score was used to assess disease severity. Health care resource utilization was assessed by chart review and patient questionnaires. ResultsIn 175 patients, mean (SD) AQoL-8D and EQ-5D-5L scores were greater for patients in remission (0.80 [0.19] and 0.81 [0.18], respectively) than for patients with active disease (0.70 [0.20] and 0.72 [0.19], respectively, both Ps<0.001). IBDQ correlated with both AQoL-8D (r=0.73; P<0.0001) and EQ-5D-5L (0.69; P<0.0001). Mean 3-month UC-related health care cost per patient was AUD $2914 (SD=$3447 [mean for patients in remission=$1970; mild disease=$3736; moderate/severe disease=$4162]). Patients in remission had the least work and activity impairment. ConclusionsMore severe UC disease was associated with poorer QoL. Substantial health care utilization, costs, and work productivity impairments were found in this sample of patients with UC. Moreover, greater disease activity was associated with greater health care costs and impairment in work productivity and daily activities.