Search

Background: Recent systematic reviews show varying methods for eliciting, modelling, and reporting preference-based values for child health-related quality-of-life (HRQoL) outcomes, thus producing value sets with different characteristics. Reporting in many of the reviewed studies was found to be incomplete and inconsistent, making them difficult to assess. Checklists can help to improve standards of reporting; however, existing checklists do not address methodological issues for valuing child HRQoL. Existing checklists also focus on reporting methods and processes used in developing HRQoL values, with less focus on reporting of the values' key characteristics and properties. We aimed to develop a checklist for studies generating values for child HRQoL, including for disease-specific states and value sets for generic child HRQoL instruments., Development: A conceptual model provided a structure for grouping items into five modules. Potential items were sourced from an adult HRQoL checklist review, with additional items specific to children developed using recent reviews. Checklist items were reduced by eliminating duplication and overlap, then refined for relevance and clarity via an iterative process. Long and short checklist versions were produced for different user needs. The resulting long RETRIEVE contains 83 items, with modules for reporting methods (A-D) and characteristics of values (E), for researchers planning and reporting child health valuation studies. The short RETRIEVE contains 14 items for decision makers or researchers choosing value sets., Conclusion: Applying the RETRIEVE checklists to relevant studies suggests feasibility. RETRIEVE has the potential to improve completeness in the reporting of preference-based values for child HRQOL outcomes and to improve assessment of preference-based value sets., (© 2024. The Author(s).)

Background: The Paediatric Quality of life Inventory (PedsQL TM ) Generic Core Scales and the Child Health Utilities 9 Dimensions (CHU9D) are two paediatric health-related quality of life (HRQoL) measures commonly used in overweight and obesity research. However, no studies have comprehensively established the psychometric properties of these instruments in the context of paediatric overweight and obesity. The aim of this study was to assess the reliability, acceptability, validity and responsiveness of the PedsQL and the CHU9D in the measurement of HRQoL among children and adolescents living with overweight and obesity., Subjects/methods: Subjects were 6544 child participants of the Longitudinal Study of Australian Children, with up to 3 repeated measures of PedsQL and CHU9D and aged between 10 and 17 years. Weight and height were measured objectively by trained operators, and weight status determined using World Health Organisation growth standards. We examined reliability, acceptability, known group and convergent validity and responsiveness, using recognised methods., Results: Both PedsQL and CHU9D demonstrated good internal consistency reliability, and high acceptability. Neither instrument showed strong convergent validity, but PedsQL appears to be superior to the CHU9D in known groups validity and responsiveness. Compared with healthy weight, mean (95%CI) differences in PedsQL scores for children with obesity were: boys -5.6 (-6.2, -4.4); girls -6.7 (-8.1, -5.4) and differences in CHU9D utility were: boys -0.02 (-0.034, -0.006); girls -0.035 (-0.054, -0.015). Differences in scores for overweight compared with healthy weight were: PedsQL boys -2.2 (-3.0, -1.4) and girls -1.3 (-2.0, -0.6) and CHU9D boys: no significant difference; girls -0.014 (-0.026, -0.003)., Conclusion: PedsQL and CHU9D overall demonstrated good psychometric properties, supporting their use in measuring HRQoL in paediatric overweight and obesity. CHU9D had poorer responsiveness and did not discriminate between overweight and healthy weight in boys, which may limit its use in economic evaluation., (© 2023. The Author(s).)

Background/aims: Discrete choice experiments (DCEs) with either duration included an attribute or with dead included as an option can be used as a stand-alone approach to value health states. This paper reports on a DCE with both of these features to develop an EQ-5D-5L value set for Australia., Methods: A DCE was undertaken using a large Australian panel of internet respondents, from which a sample of more than 4000 Australian adults was chosen, stratified to be population representative on age and gender. The DCE contained 500 choice triplets, with two EQ-5D-5L health states with duration, and dead as the third option. Each respondent answered 12 choice sets from the 500, stating both the best and worst options from the three available. The design was constructed to estimate a utility algorithm with main effects plus some key interaction terms. A variety of approaches to parameterising interactions, and to anchoring the value set on the required 0-1 scale, were tested. A preferred Australian adult utility algorithm for use in cost-utility analysis was then generated., Results: In total, 4477 people completed at least one choice set and were included in the analysis. The results reflected the monotonic structure of the EQ-5D-5L, in that moving from no problems to extreme problems led to worsening utility in each dimension. Inclusion of interaction terms demonstrates that the disutility of the first dimension moving to a poor level (defined as either level 5, or level 4 or 5) had a large impact, but subsequent dimensions moving to a poor level had a relatively smaller disutility., Discussion: This work develops a value set for the EQ-5D-5L in Australia, and also provides a range of methodological insights which can inform future work using a stand-alone DCE to value health in other countries., (© 2023. The Author(s).)

Objective: This paper reports on the valuation of the classification system for the Quality-of-Life Aged Care Consumers (QOL-ACC) instrument using a discrete choice experiment (DCE) with duration with a large sample of older people receiving aged care services., Methods: A DCE with 160 choice sets of two quality-of-life state-survival duration combinations blocked into 20 survey versions, with eight choice sets in each version, was designed and administered through an on-line survey to older Australians receiving aged care services in home and via interviewer facilitation with older people in residential aged care settings. Model specifications investigating preferences with respect to survival duration and interactions between QOL-ACC dimension levels were estimated. Utility weights were developed, with estimated coefficients transformed to the 0 (being dead) to 1 (full health) scale to generate a value set suitable for application in quality assessment and for the calculation of quality-adjusted life-years for use in economic evaluation., Results: In total, 953 older people completed the choice experiment with valid responses. The estimation results from econometric model specifications indicated that utility increased with survival duration and decreased according to quality-of-life impairment levels. An Australian value set (range - 0.56 to 1.00) was generated for the calculation of utilities for all QOL-ACC states., Conclusion: The QOL-ACC is unique in its focus on measuring and valuing quality of life from the perspective of older people themselves, thereby ensuring that the preferences of aged care service users are the primary focus for quality assessment and economic evaluation., (© 2022. The Author(s).)

Objectives: To assess the impact of a Consumer Directed Care (CDC) model of service delivery on the quality of life of older people receiving home care packages., Methods: Quality of life was assessed using validated instruments. The relationship between quality of life and length of time exposed to CDC was examined using descriptive statistical and multivariate regression analyses., Results: Consenting older adults (n = 150) in receipt of home care packages participated. Quality of life and capability scores were higher for older people in receipt of a CDC model of service delivery for <12 months compared to those receiving the model of care for longer, although this difference was not statistically significant. However, older people with more recent exposure to CDC indicated a stronger capability to do things that made them feel valued., Conclusion: Extended longitudinal follow-up is needed to facilitate a detailed examination of the relationship between the evolution of CDC and its longer-term influences on quality of life., (© 2021 AJA Inc.)

Objectives: The objective of this study was to investigate the degree of inconsistency in quality-of-life attribute preference orderings generated via successive best-worst scaling (a form of ranking whereby the respondent chooses the best and worst attributes from a choice set, these attributes are then eliminated and the best and worst attributes from the reduced choice set are then chosen and this process is continued until all presented attributes are eliminated) and conventional ranking methods (whereby the respondent chooses the best, second best and third best from a choice set until all presented attributes are eliminated)., Methods: An on-line survey was developed for administration to two general population samples comprising younger people (aged 18-64 years) and older people (aged 65 years and above). Data were analysed in STATA through an empirical examination of the relative level of choice inconsistency (randomness in responses or the variability in choice outcomes not explained by attributes and their associated preference weights) for successive best-worst in comparison with the conventional ranking method for the younger and older person samples., Results: For the younger person sample, both methods were found to be similarly consistent. In contrast, for the older person sample, ranking performed relatively worse than best-worst scaling with more inconsistent responses (tau = 0.515, p < 0.01)., Conclusions: These findings lend some support to the hypothesis initially propagated by the developers of best-worst scaling that it is a comparatively easier choice task for respondents to undertake than a traditional ranking task.

Introduction: The ageing of the population represents a significant challenge for aged care in Australia and in many other countries internationally. In an environment of increasing resource constraints, new methods, techniques and evaluative frameworks are needed to support resource allocation decisions that maximise the quality of life and well-being of older people. Economic evaluation offers a rigorous, systematical and transparent framework for measuring quality and efficiency, but there is currently no composite mechanism for incorporating older people's values into the measurement and valuation of quality of life for quality assessment and economic evaluation. In addition, to date relatively few economic evaluations have been conducted in aged care despite the large potential benefits associated with their application in this sector. This study will generate a new preference based older person-specific quality of life instrument designed for application in economic evaluation and co-created from its inception with older people., Methods and Analysis: A candidate descriptive system for the new instrument will be developed by synthesising the findings from a series of in-depth qualitative interviews with 40 older people currently in receipt of aged care services about the salient factors which make up their quality of life. The candidate descriptive system will be tested for construct validity, practicality and reliability with a new independent sample of older people (n=100). Quality of life state valuation tasks using best worst scaling (a form of discrete choice experiment) will then be undertaken with a representative sample of older people currently receiving aged care services across five Australian states (n=500). A multinomial (conditional) logistical framework will be used to analyse responses and generate a scoring algorithm for the new preference-based instrument., Ethics and Dissemination: The new quality of life instrument will have wide potential applicability in assessing the cost effectiveness of new service innovations and for quality assessment across the spectrum of ageing and aged care. Results will be disseminated in ageing, quality of life research and health economics journals and through professional conferences and policy forums. This study has been reviewed by the Human Research Ethics Committee of the University of South Australia and has ethics approval (Application ID: 201644)., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Purpose: To systematically compare, via ranking and best worst tasks, the relative importance of key dimensions of quality of life for younger and older people., Methods: A web-based survey was developed for administration to two Australia-wide community-based samples comprising younger people aged 18-64 years and older people aged 65 years and above. Respondents were asked to rank 12 quality of life dimensions. Respondents also completed a successive best worst task using the same 12 quality of life dimensions., Results: The relative importance of the quality of life dimensions differed for younger and older person samples. For older people, the ability to be independent and to have control over their daily lives were particularly important for their overall quality of life whereas for younger people, mental health was considered most important., Conclusions: Many interventions accessed by older people in geriatric medicine and aged care sectors have a broader impact upon quality of life beyond health status. The findings from this study indicate that a focus on broader aspects of quality of life may also be consistent with the preferences of older people themselves as to what constitutes quality of life from their perspective.

Background: This study examined the relationships between a newly developed older person-specific non-preference-based quality of life (QoL) instrument (Older People's Quality of Life brief questionnaire (OPQoL-brief)) and two generic preference-based instruments (the EQ-5D-3L Level (EQ-5D-3 L) and the Adult Social Care Outcomes Toolkit (ASCOT) in a community-dwelling population of Australian older people receiving aged care services., Methods: We formulated hypotheses about the convergent validity between the instruments (examined by Wilcoxon-Mann Whitney, Kruskal Wallis and Spearman's correlation tests) and levels of agreement (assessed using intra class correlation (ICC) and modified Bland-Altman plots based on normalized Z EQ-5D-3 L and ASCOT utilities and OPQoL-Brief summary scores)., Results: The utilities/summary scores for 87 participants (aged 65-93 years) were moderately but positively correlated. Moderate convergent validity was evident for a number of instrument dimensions with the strongest relationship (r = 0.57) between 'enjoy life' (OPQoL-Brief) and 'social contact' (ASCOT). The overall ICC was 0.54 and Bland-Altman scatter plots showed 3-6% of normalized Z-scores were outside the 95% limits of agreement suggesting moderate agreement between all three instruments (agreement highest between the OPQoL-Brief and the ASCOT)., Conclusions: Our results suggest that the OPQoL-Brief, the ASCOT and the EQ-5D&#95;3L are suitable for measuring quality of life outcomes in community-dwelling populations of older people. Given the different constructs underpinning these instruments, we recommend that choice of instrument should be guided by the context in which the instruments are being applied. Currently, the OPQoL-Brief is not suitable for use in cost-utility analyses as it is not preference-based. Given their different perspectives, we recommend that both the ASCOT and the EQ-5D are applied simultaneously to capture broader aspects of quality of life and health status within cost-utility analyses within the aged care sector. Future research directed towards the development of a new single preference-based instrument that incorporates both health status and broader aspects of quality of life within quality adjusted life year calculations for older people would be beneficial.

Background: Cost-effectiveness analyses of interventions for older adults have traditionally focused on health status. However, there is increasing recognition of the need to develop new instruments to capture quality of life in a broader sense in the face of age-associated increasing frailty and declining health status, particularly in the economic evaluation of aged and social care interventions that may have positive benefits beyond health., Objective: To explore the relative importance of health and broader quality of life domains for defining quality of life from the perspective of older South Australians., Methods: Older adults (n=21) from a day rehabilitation facility in Southern Adelaide, South Australia attended one of two audio-recorded focus groups. A mixed methods (qualitative and quantitative) study design was adopted. The study included three main components. First was a general group discussion on quality of life and the factors of importance in defining quality of life. Second was a structured ranking exercise in which individuals were asked to rank domains from the brief Older People's Quality of Life (OPQOL-brief) questionnaire and Adult Social Care Outcomes Toolkit (ASCOT) in order of importance. Third, participants were asked to self-complete the EuroQol five-dimension (EQ-5D), a measure of health status, and two broader quality-of-life measures: the OPQOL-brief and ASCOT., Results: Mean scores on the EQ-5D, OPQOL-brief and ASCOT were 0.71 (standard deviation [SD] 0.20, range 0.06-1.00), 54.6 (SD 5.5, range 38-61) and 0.87 (SD 0.13, range 0.59-1.00), respectively, with higher scores reflecting better ratings. EQ-5D scores were positively associated with OPQOL-brief (Spearman's Rho: 0.730; p<0.01), but not ASCOT. Approximately half (52.4%) of the participants ranked either 'health' or 'psychological and emotional well-being' as the domain most important to their quality of life. However, one-third (33.3%) of the total sample ranked a non-health domain from the ASCOT or OPQOL-brief (safety, dignity, independence) as the most important contributing factor to their overall quality of life. Qualitative analysis of focus group transcripts supported the high value of both health-related (health, psychological well-being) and social (independence, safety) domains to quality of life., Conclusions: Older adults value both health and social domains as important to their overall quality of life. Future economic evaluations of health, community and aged-care services for older adults should include assessment of both health-related and broader aspects of quality of life.

Background: Since the inception of the National Institute for Health and Clinical Excellence (NICE) in England, there have been questions about the empirical basis for the cost-per-QALY threshold used by NICE and whether QALYs gained by different beneficiaries of health care should be weighted equally. The Social Value of a QALY (SVQ) project, reported in this paper, was commissioned to address these two questions. The results of SVQ were released during a time of considerable debate about the NICE threshold, and authors with differing perspectives have drawn on the SVQ results to support their cases. As these discussions continue, and given the selective use of results by those involved, it is important, therefore, not only to present a summary overview of SVQ, but also for those who conducted the research to contribute to the debate as to its implications for NICE. Discussion: The issue of the threshold was addressed in two ways: first, by combining, via a set of models, the current UK Value of a Prevented Fatality (used in transport policy) with data on fatality age, life expectancy and age-related quality of life; and, second, via a survey designed to test the feasibility of combining respondents' answers to willingness to pay and health state utility questions to arrive at values of a QALY. Modelling resulted in values of £10,000-£70,000 per QALY. Via survey research, most methods of aggregating the data resulted in values of a QALY of £18,000-£40,000, although others resulted in implausibly high values. An additional survey, addressing the issue of weighting QALYs, used two methods, one indicating that QALYs should not be weighted and the other that greater weight could be given to QALYs gained by some groups. Summary: Although we conducted only a feasibility study and a modelling exercise, neither present compelling evidence for moving the NICE threshold up or down. Some preliminary evidence would indicate it could be moved up for some types of QALY and down for others. While many members of the public appear to be open to the possibility of using somewhat different QALY weights for different groups of beneficiaries, we do not yet have any secure evidence base for introducing such a system. [ABSTRACT FROM AUTHOR]

The oft-applied assumption in the use of Quality Adjusted Life Years (QALYs) in economic evaluation, that all QALYs are valued equally, has been questioned from the outset. The literature has focused on differential values of a QALY based on equity considerations such as the characteristics of the beneficiaries of the QALYs. However, a key characteristic which may affect the value of a QALY is the type of QALY itself. QALY gains can be generated purely by gains in survival, purely by improvements in quality of life, or by changes in both. Using a discrete choice experiment and a new methodological approach to the derivation of relative weights, we undertake the first direct and systematic exploration of the relative weight accorded different QALY types and do so in the presence of equity considerations; age and severity. Results provide new evidence against the normative starting point that all QALYs are valued equally. [ABSTRACT FROM AUTHOR]

Despite the label "generic" health state utility instruments (HSUIs), empirical evidence shows that different HSUIs generate different estimates of Health-Related Quality of Life (HRQoL) in the same person. Once a HSUI is used to generate a QALY, the difference between HSUIs is often ignored, and decision-makers act as if 'a QALY is a QALY is a QALY'. Complementing evidence that different generic HSUIs produce different empirical values, this study addresses an important gap by exploring how HSUIs differ, and processes that produced this difference. 15 developers of six generic HSUIs used for estimating the QOL component of QALYs: Quality of Well-Being (QWB) scale; 15 Dimension instrument (15D); Health Utilities Index (HUI); EuroQol EQ-5D; Short Form-6 Dimension (SF-6D), and the Assessment of Quality of Life (AQoL) were interviewed in 2012–2013. We identified key factors involved in shaping each instrument, and the rationale for similarities and differences across measures. While HSUIs have a common purpose, they are distinctly discrete constructs. Developers recalled complex developmental processes, grounded in unique histories, and these backgrounds help to explain different pathways taken at key decision points during the HSUI development. The basis for the HSUIs was commonly not equivalent conceptually: differently valued concepts and goals drove instrument design and development, according to each HSUI's defined purpose. Developers drew from different sources of knowledge to develop their measure depending on their conceptualisation of HRQoL. We generated and analysed first-hand accounts of the development of the HSUIs to provide insight, beyond face value, about how and why such instruments differ. Findings enhance our understanding of why the six instruments developed the way they did, from the perspective of key developers of those instruments. Importantly, we provide additional, original explanation for why a QALY is not a QALY is not a QALY. • We generated and analysed unique data: interviews with developers of all six major HSUIs. • HSUIs are assumed comparable but beyond face value measure different constructs. • Deep processual, conceptual, and disciplinary differences distinguish the six HSUIs. • We developed a new explanation of how a QALY is not a QALY with implications for economic evaluation. • First-hand accounts provide valuable insights for those contemplating future HSUI development. [ABSTRACT FROM AUTHOR]

Evidence surrounding utilities for health states, derived either directly from the application of preference-based valuation methods or indirectly from the application of preference-based quality of life instruments, is increasingly being utilised to inform the cost-effectiveness of child health interventions. Proxy (parent or health professional) assessments are common in this area. This study sought to investigate the degree of convergence in childhood utilities generated directly or indirectly within dyad child and proxy assessments. A systematic literature review was conducted following PRISMA guidelines. A comprehensive literature search strategy conducted across six search engines (PubMed, Embase, Web of Science, PsychoINFO, EconLit, CINAHL and Cochrane Library). Original peer-reviewed articles that reported utilities derived directly or indirectly using simultaneous dyad child and proxy assessments were extracted. Mean and median utilities, correlation coefficients and levels of agreement were extracted, catalogued and assessed. A total of 35 studies that reported utilities for two or more respondent types were identified. Of these, 29 studies reported dyad childhood self-report and proxy utilities whilst six studies reported levels of agreement and/or correlations only without documenting overall utilities. Proxy assessment was most often conducted by parents with the HUI3 representing the most commonly applied instrument across a range of health conditions. The utilities derived from child and parent proxy assessment were bidirectional with parental proxies tending to underestimate and health professional proxies tending to overestimate relative to child self-reports. Inter-rater agreement between child self-reports and parent-proxy reports were poorer for more subjective attributes (cognition, emotion and pain), relative to physical attributes (mobility, self-care, speech, vision) of health-related quality of life. Childhood utilities derived from children or proxies are not interchangeable. The choice of self or proxy assessor may have potentially significant implications for economic evaluations of child health interventions. • Differences exist between utilities elicited via child self-reports and proxies. • The direction and magnitude of such differences are not homogenous. • Utilities elicited via chid self-reports and proxies are not interchangeable. • Both set of assessments may provide greater insight into predictors of utilities. [ABSTRACT FROM AUTHOR]