Heads up on concussion: Aboriginal and Torres Strait Islander peoples' knowledge and understanding of mild traumatic brain injury.

ISSUE ADDRESSED: Concussion awareness and knowledge among Aboriginal and Torres Strait Islander peoples residing in Perth, Western Australia and factors preventing presentation at a health service for assessment after such an injury. METHODS: Qualitative study with participants aged between 18 and 65 years. Recruitment was by Facebook advertising and snowball sampling. A semi-structured topic yarning guide was used to guide conversations through 1:1, multi-person or group yarns. Yarns were audio-recorded, transcribed and thematically analysed. RESULTS: Twenty-four participants were recruited. A good knowledge of modes of concussion injury was identified in these participants. However, they identified difficulty differentiating this injury from other injuries or medical conditions. Multiple factors contributed to a reluctance to seek assessment and further management of a potential concussion. Multiple strategies to enhance education and presentation for assessment were suggested by participants. CONCLUSIONS: Aboriginal and Torres Strait Islander-owned and led concussion education is the first step in enhancing understanding of this condition. Education must be coupled with improvements in the cultural safety of healthcare services, as without this, patients will continue to fail to present for assessment and management. SO WHAT?: It is recommended that concussion education focuses on the differentiation of concussion as a diagnosis from other injuries. Information regarding where and when to seek medical assessment is recommended, and this must be in a culturally safe environment. Typical recovery and potential sequelae must be explored, in programs led and devised by Aboriginal and Torres Strait Islander peoples engaged with the community for which the education is proposed.

Willingness to pay for expanded non-invasive prenatal screening - An online discrete choice experiment from the perspective of women living in Western Australia.

INTRODUCTION: Ongoing advances in genetic technology may soon provide prenatal screening for multiple genetic conditions. AIMS: The aims were to investigate what prenatal screening test characteristics women prioritise and their willingness to pay for these tests. METHODS: We designed an online survey incorporating a series of discrete choice scenarios. Dimensions and levels were selected based on existing prenatal tests and a hypothetical prenatal test that could non-invasively detect multiple genetic disorders in pregnancy. Participants were recruited from social media platforms. Data were analysed using conditional logistic regression and latent class analysis (LCA). RESULTS: A total of 219 women completed the survey. Women with higher incomes and those with a tertiary education were willing to pay more than other groups. The maximum willingness to pay was AUD1870 (95% confidence interval: 1630, 2112) for a hypothetical non-invasive test to detect multiple genetic conditions in early pregnancy. An LCA demonstrated considerable heterogeneity in preferences, differing in both overall preference for testing and test characteristics considered most attractive. Among the participants, decision factors cited by 14.5% of participants were the risk of pregnancy loss, making them less likely to undergo testing; for 32.1% participants, accuracy was a major factor, and they were very likely to have testing; for 12.9%, test availability early in pregnancy was a decision factor. CONCLUSIONS: If a non-invasive test that could detect the greatest number of genetic disorders in pregnancy was available, the priorities were test accuracy, risk of pregnancy loss and a test available early in pregnancy.

Rationale, conceptual issues, and resultant protocol for a mixed methods Person Trade Off (PTO) and qualitative study to estimate and understand the relative value of gains in health for children and young people compared to adults.

BACKGROUND: Economic evaluation of healthcare typically assumes that an identical health gain to different patients has the same social value. There is some evidence that the public may give greater value to gains for children and young people, although this evidence is not always consistent. We present a mixed methods study protocol where we aim to explore public preferences regarding health gains to children and young people relative to adults, in an Australian setting. METHODS: This study is a Person Trade Off (PTO) choice experiment that incorporates qualitative components. Within the PTO questions, respondents will be asked to choose between treating different groups of patients that may differ in terms of patient characteristics and group size. PTO questions will be included in an online survey to explore respondent views on the relative value of health gains to different age groups in terms of extending life and improving different aspects of quality of life. The survey will also contain attitudinal questions to help understand the impact of question style upon reported preferences. Additionally, the study will test the impact of forcing respondents to express a preference between two groups compared with allowing them to report that the two groups are equivalent. One-to-one 'think aloud', semi-structured interviews will be conducted to explore a sub-sample of respondents' motivations and views in more detail. Focus groups will be conducted with members of the public to discuss the study findings and explore their views on the role of public preferences in health care prioritisation based on patient age. DISCUSSION: Our planned study will provide valuable information to healthcare decision makers in Australia who may need to decide whether to pay more for health gains for children and young people compared with adults. Additionally, the methodological test of forcing respondent choice or allowing them to express equivalence will contribute towards developing best practice methods in PTO studies. The rationale for and advantages of the study approach and potential limitations are discussed in the protocol.

Nonopioid analgesic use in older patients admitted for orthopedic rehabilitation.

BACKGROUND: Multimodal analgesia (MMA) combines opioids with nonopioid analgesics (NOAs) to mitigate opioid-related adverse events and development of opioid use disorders. Although MMA has become the standard for orthopedic perioperative pain management, guidance is less clear for the approximately 15% of patients who go on to require inpatient orthopedic rehabilitation (IOR) postoperatively. The IOR population tends to be older and frailer and hence likely more vulnerable to adverse events. Little research has been done to shed light on how NOAs are used in this population. OBJECTIVE: To characterize NOA prescribing in older versus younger adults during IOR admissions and to determine predictors of NOA prescribing in an older IOR population. DESIGN: Retrospective case-control study. SETTING: Two IOR wards at an academic rehabilitation hospital in Toronto, Canada. PATIENTS: All patients aged ≥50 years admitted for an orthopedic indication between November 2019 and June 2021; the patients aged <65 group was included for comparative characterization of NOA prescribing versus older peers. INTERVENTIONS: Not applicable. MAIN OUTCOME MEASURES: Medication use and adverse events, pain, and rehabilitation outcomes such as the Functional Independence Measure, discharge destination, and length of stay. RESULTS: A total of 643 patient encounters were included; 48.2% used NOA. Age (odds ratio [OR]: 0.97; confidence interval [CI]: 0.95-0.99, p < .001) and prior NOA use (OR: 3.15; CI: 2.0-4.9, p < .001) were associated with NOA prescribing. Other positively associated factors included body mass index, psychiatric history, elective surgery, and admission from a specific referring hospital. Adverse events between NOA users and nonusers were similar. CONCLUSIONS: NOA prescribing is heterogeneous and declines with age in IOR. This points to an opportunity to explore integrating NOA into opioid-sparing MMA protocols tailored to older IOR patients, along with further study of the safety and benefit of these regimens.

Awareness and understanding of concussion among Aboriginal Australians with high health literacy.

Aim: Indigenous Australians have higher rates of traumatic brain injury, with 74-90% of such injuries being concussion. This study explores concussion awareness and knowledge in Aboriginal Western Australians with high health literacy. Materials & methods: Participants, aged 18-65 years, engaged in research topic yarning, and thematic analysis of the qualitative data then undertaken. Results: There was awareness that direct head trauma can result in concussion, but a lack of differentiation between concussion and other head injuries. Knowledge was gained from sport, media or lived-experience. Symptom minimization and diversity of concussion symptoms prevented participants from seeking medical treatment. This was exacerbated by a mistrust of the medical system. Conclusion: Research findings highlight knowledge and service gaps where co-designed strategies can be targeted.

Despite higher injury rates in Indigenous Australians, literature relating to brain injuries such as concussion in these populations is lacking. This article provides information regarding awareness and knowledge of concussion in Aboriginal peoples with health or first responder experience. Through the process of yarning, 25 Aboriginal participants shared their awareness and knowledge of concussion. While there was good understanding of how concussion injury can occur, it was found that identification of concussion as a diagnosis is complex, and it is hard to differentiate from other conditions. Minimization of concussion symptoms was commonly reported, and multiple barriers to seeking healthcare after a potential concussion occurs were identified. Despite having health or first responder experience, participants reported their concussion knowledge was gained from community and televised sport, other aspects of media, and word of mouth. These results support the need for Indigenous Australian led and co-designed concussion education. They also support the need for further research in this space, targeting Indigenous Australian populations without high health literacy.

Financial incentives to motivate treatment for hepatitis C with direct acting antivirals among Australian adults (The Methodical evaluation and Optimisation of Targeted IncentiVes for Accessing Treatment of Early-stage hepatitis C: MOTIVATE-C): protocol for a dose-response randomised controlled study.

BACKGROUND: Untreated hepatitis C virus (HCV) infection can result in cirrhosis and hepatocellular cancer. Direct-acting antiviral (DAA) therapies are highly effective and have few side effects compared to older interferon-based therapy. Despite the Australian government providing subsidised and unrestricted access to DAA therapy for chronic HCV infection, uptake has not been sufficient to meet the global target of eliminating HCV as a public health threat by 2030. This study will offer people with HCV financial incentives of varying values in order to evaluate its effect on initiation of DAA therapy in primary care. METHODS: Australian adults (18 years or older) who self-report as having current untreated HCV infection can register to participate via an automated SMS-based system. Following self-screening for eligibility, registrants are offered a financial incentive of randomised value (AUD 0 to 1000) to initiate DAA therapy. Study treatment navigators contact registrants who have consented to be contacted, to complete eligibility assessment, outline the study procedures (including the requirement for participants to consult a primary care provider), obtain consent, and finalise enrolment. Enrolled participants receive their offered incentive on provision of evidence of DAA therapy initiation within 12 weeks of registration (primary endpoint). Balanced randomisation is used across the incentive range until the first analysis, after which response-adaptive randomisation will be used to update the assignment probabilities. For the primary analysis, a Bayesian 4-parameter EMAX model will be used to estimate the dose-response curve and contrast treatment initiation at each incentive value against the control arm (AUD 0). Specified secondary statistical and economic analyses will evaluate the effect of incentives on adherence to DAA therapy, virological response, and cost-effectiveness. DISCUSSION: This project seeks to gain an understanding of the dose-response relationship between incentive value and DAA treatment initiation, while maximising the number of people treated for HCV within fixed budget and time constraints. In doing so, we hope to offer policy-relevant recommendation(s) for the use of financial incentives as a pragmatic, efficient, and cost-effective approach to achieving elimination of HCV from Australia. TRIAL REGISTRATION: ANZCTR (anzctr.org.au), Identifier ACTRN12623000024640, Registered 11 January 2023 ( https://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=384923&isReview=true ).

How Does the New Australian EQ-5D-5L Value Set Impact Utility Scores? Analysis of Data from the Australian Orthopaedic Association National Joint Replacement Registry.

BACKGROUND: With advances in health state valuation methods, new value sets may be developed for some countries. Quantifying the impact of moving between existing and new value sets is critical for guiding decisions around utility score interpretation, reporting and comparison with published scores. OBJECTIVES: The aim of this study is to examine, using large-scale national registry data, how the new Australian EQ-5D-5L value set impacts utility scores for patients undergoing joint replacement. METHODS: Data from the Australian Orthopaedic Association National Joint Replacement Registry were used for this analysis. All primary total hip (THR), knee (TKR), and shoulder replacement (TSR) procedures between 2018 and 2022 with pre-operative and 6-month post-operative EQ-5D-5L data were included. Utility scores were generated using the 2013 and 2023 Australian value sets ('previous' and 'new' value sets, respectively) and analysed descriptively for each joint replacement cohort. Agreement between the two utility score sets was evaluated using concordance correlation coefficients and Bland-Altman plots. RESULTS: EQ-5D-5L data were available for 17,576 THR, 23,010 TKR, and 1667 TSR procedures. The new value set produced a lowest possible EQ-5D-5L utility score of -0.30 (compared with -0.68 previously) and fewer patients had 'worse-than-dead' quality of life (score < 0.00) before surgery. Mean pre-operative scores were 0.21 (THR), 0.19 (TKR), and 0.17 (TSR) units higher with the new value set, and mean post-operative scores were 0.11-0.14 units higher. The new value set resulted in smaller effect sizes for the THR (1.08 versus 1.23) and TKR cohorts (0.86 versus 0.92). There was moderate-to-good overall agreement (coefficients: 0.70-0.80), but concordance varied by time point. CONCLUSION: Although acceptable agreement was evident, the new Australian value set produces less extreme negative utility scores and markedly higher group-level scores. Transition to reporting new EQ-5D-5L utility scores will require accompanying explanation to signal measurement modifications rather than better quality of life.

Public Preferences for Genetic and Genomic Risk-Informed Chronic Disease Screening and Early Detection: A Systematic Review of Discrete Choice Experiments.

PURPOSE: Genetic and genomic testing can provide valuable information on individuals' risk of chronic diseases, presenting an opportunity for risk-tailored disease screening to improve early detection and health outcomes. The acceptability, uptake and effectiveness of such programmes is dependent on public preferences for the programme features. This study aims to conduct a systematic review of discrete choice experiments assessing preferences for genetic/genomic risk-tailored chronic disease screening. METHODS: PubMed, Embase, EconLit and Cochrane Library were searched in October 2023 for discrete choice experiment studies assessing preferences for genetic or genomic risk-tailored chronic disease screening. Eligible studies were double screened, extracted and synthesised through descriptive statistics and content analysis of themes. Bias was assessed using an existing quality checklist. RESULTS: Twelve studies were included. Most studies focused on cancer screening (n = 10) and explored preferences for testing of rare, high-risk variants (n = 10), largely within a targeted population (e.g. subgroups with family history of disease). Two studies explored preferences for the use of polygenic risk scores (PRS) at a population level. Twenty-six programme attributes were identified, with most significantly impacting preferences. Survival, test accuracy and screening impact were most frequently reported as most important. Depending on the clinical context and programme attributes and levels, estimated uptake of hypothetical programmes varied from no participation to almost full participation (97%). CONCLUSION: The uptake of potential programmes would strongly depend on specific programme features and the disease context. In particular, careful communication of potential survival benefits and likely genetic/genomic test accuracy might encourage uptake of genetic and genomic risk-tailored disease screening programmes. As the majority of the literature focused on high-risk variants and cancer screening, further research is required to understand preferences specific to PRS testing at a population level and targeted genomic testing for different disease contexts.

Community-based participatory-research through co-design: supporting collaboration from all sides of disability.

BACKGROUND: As co-design and community-based participatory research gain traction in health and disability, the challenges and benefits of collaboratively conducting research need to be considered. Current literature supports using co-design to improve service quality and create more satisfactory services. However, while the 'why' of using co-design is well understood, there is limited literature on 'how' to co-design. We aimed to describe the application of co-design from start to finish within a specific case study and to reflect on the challenges and benefits created by specific process design choices. METHODS: A telepractice re-design project has been a case study example of co-design. The co-design was co-facilitated by an embedded researcher and a peer researcher with lived experience of disability. Embedded in a Western Australian disability organisation, the co-design process included five workshops and a reflection session with a team of 10 lived experience and staff participants (referred to as co-designers) to produce a prototype telepractice model for testing. RESULTS: The findings are divided into two components. The first describes the process design choices made throughout the co-design implementation case study. This is followed by a reflection on the benefits and challenges resulting from specific process design choices. The reflective process describes the co-designers' perspective and the researcher's and organisational experiences. Reflections of the co-designers include balancing idealism and realism, the value of small groups, ensuring accessibility and choice, and learning new skills and gaining new insights. The organisational and research-focused reflections included challenges between time for building relationships and the schedules of academic and organisational decision-making, the messiness of co-design juxtaposed with the processes of ethics applications, and the need for inclusive dissemination of findings. CONCLUSIONS: The authors advocate that co-design is a useful and outcome-generating methodology that proactively enables the inclusion of people with disability and service providers through community-based participatory research and action. Through our experiences, we recommend community-based participatory research, specifically co-design, to generate creative thinking and service design.

Socio-economic and spatial inequalities in animal sources of iron-rich foods consumption among children 6-23 months old in Ethiopia: A decomposition analysis.

Iron deficiency anaemia is the most common type of anaemia in young children which can lead to long-term health consequences such as reduced immunity, impaired cognitive development, and school performance. As children experience rapid growth, they require a greater supply of iron from iron-rich foods to support their development. In addition to the low consumption of iron-rich foods in low- and lower-middle-income countries, there are also regional and socio-economic disparities. This study aimed to assess contributing factors of wealth-related inequality and geographic variations in animal sources of iron-rich food consumption among children aged 6-23 months in Ethiopia. We used data from the Ethiopian Mini Demographic and Health Surveys (EMDHS) 2019, a national survey conducted using stratified sampling techniques. A total of 1,461 children of age 6-23 months were included in the study. Iron-rich animal sources of food consumption were regarded when parents/caregivers reported that a child took at least one of the four food items identified as iron-rich food: 1) eggs, 2) meat (beef, lamb, goat, or chicken), 3) fresh or dried fish or shellfish, and 4) organs meat such as heart or liver. Concentration indices and curves were used to assess wealth-related inequalities. A Wagstaff decomposition analysis was applied to identify the contributing factors for wealth-related inequality of iron-rich animal source foods consumption. We estimated the elasticity of wealth-related inequality for a percentage change in socioeconomic variables. A spatial analysis was then used to map the significant cluster areas of iron-rich animal source food consumption among children in Ethiopia. The proportion of children who were given iron-rich animal-source foods in Ethiopia is 24.2% (95% CI: 22.1%, 26.5%), with figures ranging from 0.3% in Dire Dawa to 37.8% in the Oromia region. Children in poor households disproportionately consume less iron-rich animal-source foods than those in wealthy households, leading to a pro-rich wealth concentration index (C) = 0.25 (95% CI: 0.12, 0.37). The decomposition model explained approximately 70% of the estimated socio-economic inequality. About 21% of the wealth-related inequalities in iron-rich animal source food consumption in children can be explained by having primary or above education status of women. Mother's antenatal care (ANC) visits (14.6%), living in the large central and metropolitan regions (12%), household wealth index (10%), and being in the older age group (12-23 months) (2.4%) also contribute to the wealth-related inequalities. Regions such as Afar, Eastern parts of Amhara, and Somali were geographic clusters with low iron-rich animal source food consumption. There is a low level of iron-rich animal source food consumption among children, and it is disproportionately concentrated in the rich households (pro-rich distribution) in Ethiopia. Maternal educational status, having ANC visits, children being in the older age group (12-23 months), and living in large central and metropolitan regions were significant contributors to these wealth-related inequalities in iron-rich animal source foods consumption. Certain parts of Ethiopia such as, Afar, Eastern parts of Amhara, and Somali should be considered priority areas for nutritional interventions to increase children's iron-rich animal source foods consumption.

Investigating consumer preferences and experiences of telehealth services in Australian allied health practice: a study protocol.

INTRODUCTION: Telehealth service provision and uptake has rapidly increased since the COVID-19 pandemic, allowing healthcare to be delivered safely and reducing non-essential face-to-face (F2F) contact. In Australia, the expansion of subsidisation of telehealth during COVID has led to its permanent installation within Australian primary care in 2022. However, little is known about consumer preferences and experiences with these services, particularly in relation to allied health practice (AHP). Previous studies on telehealth services have focused on general practice rather than allied health (AH) and broader primary care. Given that AH professionals make up a large proportion of the Australian healthcare workforce, the purpose of this study is to explore consumer preferences and experiences with telehealth AHP healthcare. METHODS AND ANALYSIS: This study uses a mixed methods research design that incorporates three independent but interrelated phases. Phase 2 of the study will use a focus group methodology to discuss consumer attitudes and experiences via a semistructured interview format. Phase 3 involves a discrete choice experiment (DCE) involving a large online survey conducted across the general population. The DCE will be informed by the qualitative findings from phases 1 and 2. The experiment aims to elicit consumer preferences in relation to AH services delivered through telehealth or F2F consultations, based on several hypothetical scenarios and preferences over several different dimensions. ETHICS AND DISSEMINATION: Ethics approval has been obtained from La Trobe University (approval number HEC23404). Findings will be disseminated as reports, presentations and peer-reviewed journal articles.

Stratification of Barrett's esophagus surveillance based on p53 immunohistochemistry: a cost-effectiveness analysis by an international collaborative group.

BACKGROUND: Surveillance of nondysplastic Barrett's esophagus (NDBE) is recommended to identify progression to dysplasia; however, the most cost-effective strategy remains unclear. Mutation of TP53 or aberrant expression of p53 have been associated with the development of dysplasia in BE. We sought to determine if surveillance intervals for BE could be stratified based on p53 expression. METHODS: A Markov model was developed for NDBE. Patients with NDBE underwent p53 immunohistochemistry (IHC) and those with abnormal p53 expression underwent surveillance endoscopy at 1 year, while patients with normal p53 expression underwent surveillance in 3 years. Patients with dysplasia underwent endoscopic therapy and surveillance. RESULTS: On base-case analysis, the strategy of stratifying surveillance based on abnormal p53 IHC was cost-effective relative to conventional surveillance and a natural history model, with an incremental cost-effectiveness ratio (ICER) of $8258 for p53 IHC-based surveillance. Both the conventional and p53-stratified surveillance strategies dominated the natural history model. On probabilistic sensitivity analysis, the p53 IHC strategy ($28 652; 16.78 quality-adjusted life years [QALYs]) was more cost-effective than conventional surveillance ($25 679; 16.17 QALYs) with a net monetary benefit of $306 873 compared with conventional surveillance ($297 642), with an ICER <$50 000 in 96% of iterations. The p53-stratification strategy was associated with a 14% reduction in the overall endoscopy burden and a 59% increase in dysplasia detection. CONCLUSION: A surveillance strategy for BE based on abnormal p53 IHC is cost-effective relative to a conventional surveillance strategy and is likely to be associated with higher rates of dysplasia diagnosis.

Accuracy of energy and nutrient intake estimation versus observed intake using 4 technology-assisted dietary assessment methods: a randomized crossover feeding study.

BACKGROUND: Technology-assisted 24-h dietary recalls (24HRs) have been widely adopted in population nutrition surveillance. Evaluations of 24HRs inform improvements, but direct comparisons of 24HR methods for accuracy in reference to a measure of true intake are rarely undertaken in a single study population. OBJECTIVES: To compare the accuracy of energy and nutrient intake estimation of 4 technology-assisted dietary assessment methods relative to true intake across breakfast, lunch, and dinner. METHODS: In a controlled feeding study with a crossover design, 152 participants [55% women; mean age 32 y, standard deviation (SD) 11; mean body mass index 26 kg/m2, SD 5] were randomized to 1 of 3 separate feeding days to consume breakfast, lunch, and dinner, with unobtrusive weighing of foods and beverages consumed. Participants undertook a 24HR the following day [Automated Self-Administered Dietary Assessment Tool-Australia (ASA24); Intake24-Australia; mobile Food Record-Trained Analyst (mFR-TA); or Image-Assisted Interviewer-Administered 24-hour recall (IA-24HR)]. When assigned to IA-24HR, participants referred to images captured of their meals using the mobile Food Record (mFR) app. True and estimated energy and nutrient intakes were compared, and differences among methods were assessed using linear mixed models. RESULTS: The mean difference between true and estimated energy intake as a percentage of true intake was 5.4% (95% CI: 0.6, 10.2%) using ASA24, 1.7% (95% CI: -2.9, 6.3%) using Intake24, 1.3% (95% CI: -1.1, 3.8%) using mFR-TA, and 15.0% (95% CI: 11.6, 18.3%) using IA-24HR. The variances of estimated and true energy intakes were statistically significantly different for all methods (P < 0.01) except Intake24 (P = 0.1). Differential accuracy in nutrient estimation was present among the methods. CONCLUSIONS: Under controlled conditions, Intake24, ASA24, and mFR-TA estimated average energy and nutrient intakes with reasonable validity, but intake distributions were estimated accurately by Intake24 only (energy and protein). This study may inform considerations regarding instruments of choice in future population surveillance. This trial was registered at Australian New Zealand Clinical Trials Registry as ACTRN12621000209897.

Cancer-Specific Health Utilities: Evaluation of Core Measurement Properties of the EORTC QLU-C10D in Lung Cancer Patients-Data from Four Multicentre LUX-Lung Trials, Applying Six Country Tariffs.

BACKGROUND: Cost-utility analysis generally requires valid preference-based measures (PBMs) to assess the utility of patient health. While generic PBMs are widely used, disease-specific PBMs may capture additional aspects of health relevant for certain patient populations. This study investigates the construct and concurrent criterion validity of the cancer-specific European Organisation for Research and Treatment of Cancer (EORTC) Quality of Life Utility-Core 10 dimensions (QLU-C10D) in non-small-cell lung cancer patients. METHODS: We retrospectively analysed data from four multicentre LUX-Lung trials, all of which had administered the EORTC Quality of Life Questionnaire (QLQ-C30) and the EQ-5D-3L. We applied six country-specific value sets (Australia, Canada, Italy, the Netherlands, Poland, and the United Kingdom) to both instruments. Criterion validity was assessed via correlations between the instruments' utility scores. Correlations of divergent and convergent domains and Bland-Altman plots investigated construct validity. Floor and ceiling effects were assessed. RESULTS: The comparison of the EORTC QLU-C10D and EQ-5D-3L produced homogenous results for five of the six country tariffs. High correlations of utilities (r > 0.7) were found for all country tariffs except for the Netherlands. Moderate to high correlations of converging domain pairs (r from 0.472 to 0.718) were found with few exceptions, such as the Social Functioning-Usual Activities domain pair (max. r = 0.376). For all but the Dutch tariff, the EORTC QLU-C10D produced consistently lower utility values compared to the EQ-5D-3L (x̄ difference from - 0.082 to 0.033). Floor and ceiling effects were consistently lower for the EORTC QLU-C10D (max. 4.67% for utilities). CONCLUSIONS: The six country tariffs showed good psychometric properties for the EORTC QLU-C10D in lung cancer patients. Criterion and construct validity was established. The QLU-C10D showed superior measurement precision towards the upper and lower end of the scale compared to the EQ-5D-3L, which is important when cost-utility analysis seeks to measure health change across the severity spectrum.

An Overview of Data Collection in Health Preference Research.

This paper focuses on survey administration and data collection methods employed for stated-preference studies in health applications. First, it describes different types of survey administration methods, encompassing web-based surveys, face-to-face (in-person) surveys, and mail surveys. Second, the concept of sampling frames is introduced, clarifying distinctions between the target population and survey frame population. The discussion then extends to different types of sampling methods, such as probability and non-probability sampling, along with an evaluation of potential issues associated with different sampling methods within the context of health preference research. Third, the paper provides information about different recruitment methods, including web-surveys, leveraging patient groups, and in-clinic recruitment. Fourth, a crucial aspect addressed is the calculation of response rate, with insights into determining an adequate response rate and strategies to improve response rates in stated-preference surveys. Lastly, the paper concludes by discussing data management plans and suggesting insights for future research in this field. In summary, this paper examines the nuanced aspects of survey administration and data collection methods in stated-preference studies, offering valuable guidance for researchers and practitioners in the health domain.

Valuing the SF-6Dv2 in the capital of Iran using a discrete choice experiment with duration.

BACKGROUND: The second version of the Short-Form 6-Dimension (SF-6Dv2) classification system has recently been developed. The objective of this study was to develop a value set for SF-6Dv2 based on the societal preferences of a general population in the capital of Iran. METHODS: A representative sample of the capital of Iran (n = 3061) was recruited using a stratified multistage quota sampling technique. Face-to-face interviews were conducted using binary choice sets from the international valuation protocol of the discrete choice experiment with duration. The conditional logit was used to estimate the final value set, and a latent class model was employed to assess heterogeneity of preferences. RESULTS: Coefficients generated from the models were logically consistent and significant. The best model was the one that included an additional interaction term for cases where one or more dimensions reached their most severe levels. It provides a value set with logical consistent coefficients and the lowest percentage of worse than death health states. Predicted values for the SF-6Dv2 were within the range of - 0.796-1. Pain dimension had the largest impact on utility decrement, whereas vitality had the least impact. The presence of preference heterogeneity was evident, and the Bayesian Information Criterion indicated the optimal fit for a latent class model with two classes. CONCLUSION: This study provided the SF-6Dv2 value set for application in the context of Iran. This value set will facilitate the use of the SF-6Dv2 instrument in health economic evaluations and clinical settings.

The EORTC QLU-C10D is a valid cancer-specific preference-based measure for cost-utility and health technology assessment in the Netherlands.

BACKGROUND: Cost-utility analysis typically relies on preference-based measures (PBMs). While generic PBMs are widely used, disease-specific PBMs can capture aspects relevant for certain patient populations. Here the EORTC QLU-C10D, a cancer-specific PBM based on the QLQ-C30, is validated using Dutch trial data with the EQ-5D-3L as a generic comparator measure. METHODS: We retrospectively analysed data from four Dutch randomised controlled trials (RCTs) comprising the EORTC QLQ-C30 and the EQ-5D-3L. Respective Dutch value sets were applied. Correlations between the instruments were calculated for domains and index scores. Bland-Altman plots and intra-class correlations (ICC) displayed agreement between the measures. Independent and paired t-tests, effect sizes and relative validity indices were used to determine the instruments' performance in detecting clinically known-group differences and health changes over time. RESULTS: We analysed data from 602 cancer patients from four different trials. In overall, the EORTC QLU-C10D showed good relative validity with the EQ-5D-3L as a comparator (correlations of index scores r = 0.53-0.75, ICCs 0.686-0.808, conceptually similar domains showed higher correlations than dissimilar domains). Most importantly, it detected 63% of expected clinical group differences and 50% of changes over time in patients undergoing treatment. Both instruments showed poor performance in survivors. Detection rate and measurement efficiency were clearly higher for the QLU-C10D than for the EQ-5D-3L. CONCLUSIONS: The Dutch EORTC QLU-C10D showed good comparative validity in patients undergoing treatment. Our results underline the benefit that can be achieved by using a cancer-specific PBM for generating health utilities for cancer patients from a measurement perspective.

Psychometric Properties of the EQ-5D-Y-5L for Children With Intellectual Disability.

OBJECTIVES: The EQ-5D-Y-5L is a generic preference-based measure of health-related quality of life for children. This study aimed to describe the distributional properties, test-retest reliability, and convergent validity of the EQ-5D-Y-5L in children with intellectual disability (ID). METHODS: Caregivers of children with ID (aged 4 to 18 years) completed an online survey, including a proxy-report EQ-5D-Y-5L, the Quality-of-life Inventory-Disability, and disability-appropriate measures corresponding to the EQ-5D dimensions: mobility, self-care (SC), usual activities (UA), pain/discomfort (PD), and worry/sadness/unhappiness. Twenty-one participants repeated the EQ-5D-Y-5L a few weeks later. Test-retest reliability was computed using weighted kappa and intraclass correlation coefficients, and convergent validity using Spearman's and Pearson's correlation coefficients. RESULTS: Caregivers of 234 children completed the survey, with <1% missing values. Only 1.7% reported "no problems" on all dimensions (11111). The dimensions with the lowest percentage of "no problems" were SC and UA (both 8%). Test-retest reliability coefficients were fair to substantial for 4 dimensions (weighted kappa .30 to .79) but low for PD and overall health, as measured by the visual analog scale (EQ-VAS). Convergent validity was strong (Spearman's correlation .65 to .87) for mobility, SC, and PD; moderate to strong for worry/sadness/unhappiness (.47 to .60) and the EQ-VAS (Pearson's correlation .49); and weak to moderate for UA (.21 to .52). CONCLUSIONS: Convergent validity was generally good; test-retest reliability varied. Children with ID had lower scores on SC and UA than other populations, and their EQ-VAS could fluctuate greatly, indicating poorer and less stable health-related quality of life.