Preferences For Health States Research Articles

Abandoning Eugenics and the QALY.

Should decision making in health care, notably in respect of the allocation of resources between individuals and disease states, rest on notions of the burden of disease and denial of care as assessed by societal evaluations or on the extent to which the need of patients and caregivers is fulfilled. The prospect of the denial of health care, for those deemed 'unworthy' has a long history in the eugenics movement. Many have assumed that this 'utilitarian aberration' has long been discredited. Unfortunately, once the question of the allocation of limited health care resources is considered it reasserts itself; manifested in the creation of health state preferences and states worse than death, and application of the cost-per-QALY calculus driving claims for pricing and access. In the US, this focus on cost-per-QALY claims is most closely associated with the Institute for Clinical and Economic Review (ICER) with its regular clinical assessments and modelled imaginary simulations supporting recommendations which, in many if not most cases, give support to the denial of care. The purpose of this commentary is to point to the unfortunate similarities between 'eugenic' decision making and the application of thresholds in burden of illness cost-per-QALY exercises. If we are to finally rid ourselves of a 'eugenic' approach to health care resource allocation, then we must abandon preferences and the QALY calculus.

Health Utility Analyses in AL Amyloidosis — Existing Mapping Algorithms May be Inadequate

Introduction: Economic analyses in health research often needs outcomes assessed as a single number - a health utility score - defined by anchors of perfect health = 1 and death = 0. Two survey-based health utility measures are the EQ-5D and the SF-6D. The SF-6D is derived from responses to the SF-36® Health Survey (SF-36). Utility scores have been derived separately for each measure by analyses of preferences for different health states, but the two measures often give different results. For this reason, mapping algorithms have been developed to directly predict EQ-5D scores from the SF-36. We aimed to evaluate whether existing SF-36-to-EQ-5D mapping algorithms are appropriate for AL amyloidosis patients in clinical trials.Methods: As part of a non-interventional, longitudinal study, patients with AL amyloidosis completed online surveys which assessed demographics, disease and treatment characteristics, as well as health-related quality of life. Patients also reported specific organ involvement on the initial survey using a checklist of organs/systems commonly affected by AL amyloidosis: heart, kidney, liver, nervous system, gastrointestinal system. Patients were asked to complete the SF-36v2 and the EQ-5D (3 Level) during round 5 of data collection (18 months following the initial survey). Scores for SF-36v2 subscales, SF-6D and EQ-5D were calculated according to the survey developer's procedures. For all patients with complete subscale scores (n=184), predicted EQ-5D scores (EQ-5D-P) were calculated based on an algorithm from Rowen et al (2009). Score means, 95% confidence intervals (95%CI), standard deviations (SD), ceiling and floor effects were compared in the overall sample and in subgroups defined by self-rated disease impact (as measured by the Patient Global Impression Severity Scale [PGI-S]). Random error was evaluated in terms of mean absolute error (MAE) and mean square error (MSE). Evaluation of health impact was performed in relation to organ involvement and reported as regression parameters and 95%CI.Results: Health utility scores differed significantly between measures, with the EQ-5D having the highest scores (Mean= 0.82, 95%CI = (0.80 - 0.84), SD = 0.15), followed by EQ-5D-P (= 0.75 (0.72 - 0.77), 0.19) and SF-6D (= 0.69 (0.67 - 0.71), 0.13). EQ-5D also had the strongest ceiling effect (27% vs. 0% and 1%). None of the measures showed floor effects. Compared to the EQ-5D, random error was smaller for EQ-5D-P (MAE=0.11, MSE=0.02) than for SF-6D (MAE=0.15, MSE=0.03). Based on the PGI-S subgroup analyses, EQ-5D scores were higher than EQ-5D-P in all subgroups (0.89/0.84, 0.83/ 0.77, 0.73/0.60, 0.56/0.41). The three scores provided different assessments of the impact on health utility of heart involvement (EQ-5D: β=-0.045 (95%CI = -0.090 - -0.001) , EQ-5D-P:-0.032 (-0.088 - 0.025), SF-6D: -0.011 (-0.047 - 0.026)), nerve involvement (EQ-5D:-0.093 (-0.137 - -0.049) , EQ-5D-P: -0.125 (-0.180 - -0.070), SF-6D: -0.62 (-0.099 - -0.026)), and gastrointestinal involvement (EQ-5D:-0.058 (-0.102 - -0.014) , EQ-5D-P: -0.067 (-0.122 - -0.011), SF-6D: -0.040 (-0.076 - -0.004)).Conclusion: Two standard health utility measures, EQ-5D and SF-6D, provided different health utility values for AL amyloidosis patients and different assessments of the burden of specific disease complications. An EQ-5D prediction algorithm provided results that were in between the two measures, but the prediction of the EQ-5D was not well targeted for AL amyloidosis patients. To successfully predict EQ-5D scores in AL amyloidosis patients, a disease specific prediction algorithm needs to be developed.ReferenceRowen, D., Brazier, J., & Roberts, J. (2009). Mapping SF-36 onto the EQ-5D index: how reliable is the relationship? Health and Quality of Life Outcomes, 7 (1), 27. [Display omitted] DisclosuresMcCausland:Prothena Biosciences: Research Funding; Optum: Employment. Bjorner:Prothena Biosciences: Research Funding; Optum: Employment. Quock:Prothena Biosciences Inc: Employment, Other: Stockholder. White:Optum: Employment; Prothena Biosciences: Research Funding. Bayliss:Optum: Employment; Prothena Biosciences: Research Funding.

Comparison of Adult and Adolescent Preferences Toward EQ-5D-Y-3L Health States

ObjectivesThe international EQ-5D-Y-3L valuation protocol suggests obtaining preferences for EQ-5D-Y-3L health states from a sample of the general adult population. There is discussion around involving children and adolescents in the processes of preference elicitation and decision making. The objective of this study was to compare the preferences for EQ-5D-Y-3L obtained from adolescents for themselves to those of adults considering a hypothetical 10-year-old child in Germany, Slovenia, and Spain. MethodsA sample of a minimum of 700 adolescents and 1000 adults in each country was recruited through online panels. An online discrete choice experiment was used to obtain health-state preferences. For the purposes of comparison, all coefficients were rescaled to a 1 (best) to 0 (worst) scale. The differences between preferences in both samples were analyzed via the relative attribute importance of health dimensions from the mixed logit models. ResultsStatistically significant differences between the preferences for EQ-5D-Y-3L states given by the 2 samples were observed in all 3 countries. The overall relative attribute importance was similar between adolescents and adults; adolescents usually gave more importance to mobility and self-care, and less to anxiety/depression. The rank-order of the dimension levels between adults and adolescents differs in all 3 countries. ConclusionsPreferences toward EQ-5D-Y-3L states differ if estimated by adults taking the perspective of a child or by the adolescents themselves. Although it seems possible to obtain adolescents’ preferences for inclusion in EQ-5D-Y-3L value sets, the desirability and acceptance of their preferences by researchers and decision makers need to be explored further.

What drives differences in preferences for health states between patients and the public? A qualitative investigation of respondents’ thought processes

Cost-effectiveness analyses using quality-adjusted life-years (QALYs) are used in decision-making regarding which interventions are available via many national healthcare systems. QALYs are calculated based on health state values provided by preference elicitation techniques. Several national decision-making bodies recommend that health state values should be based on preferences elicited from general populations, rather than from patients. Previous studies have shown systematic differences between health state values elicited from members of the general population and from patients. Various explanations for this phenomenon have been proposed, however empirical evidence for these is scarce. We aimed to explore possible reasons for discrepancies between public and patient valuations by undertaking qualitative cognitive interviews, asking 14 members of the general population and 12 people with multiple sclerosis (MS) to think aloud while completing a preference elicitation task (time trade-off) for MS-related health states. The interviews were undertaken between December 2016 and October 2017 in the South West region of England, and were analysed using the Framework Method. As anticipated, we found that participants with MS had more experience of health problems and used this experience to consider how they might adapt to the health states over time, and which dimensions of health-related quality of life were most important to them. We found no evidence that participants with MS were less affected by framing effects and focusing illusions, more likely to prioritise non-physical dimensions of health, or more prone to loss aversion, endowment effects and non-compensatory decision-making. These findings contribute to our understanding of how patients and members of the general population respond to preference elicitation exercises, and why their preferences may differ, and may help to inform developing areas of research, such as the joint presentation of cost-effectiveness results from multiple perspectives, and the use of preferences elicited from patients for experienced health states.

Retraction Note to: The EQ-5D-5L Valuation Study in Egypt.

No value sets exist for either the EQ-5D-3L or the EQ-5D-5L in Egypt, despite local pharmacoeconomic guidelines recommending the use of the EQ-5D to derive utility. Most published Egyptian economic evaluation studies have used utility values from other published studies and systematic reviews. Our objective was to develop an Egyptian EQ-5D-5L value set using the international EuroQol standardized protocol (EQ-VT-2.1). Adult Egyptian participants were recruited from public places using multi-stratified quota sampling based on age, sex, and geographical distribution. Two elicitation techniques were applied: the composite time trade-off (cTTO) and discrete-choice experiments (DCEs). Before actual data collection, interviewers’ performance was assessed in a pilot phase. Data were modelled using generalized least square, Tobit, heteroskedastic, logit, and hybrid models, and the best fitting model was selected based on the value range between observed and predicted values, logical consistency of the parameters, significance level, and prediction accuracy. A total of 1378 interviews were conducted, of which 188 were excluded because they were incomplete or did not comply with protocol, 216 were pilot interviews, and 974 were included in the final analysis. The heteroskedastic model (model 4) based on the cTTO data was selected as the preferred model to generate the value set. Values ranged from − 0.93 for the worst health state (55555) to 1 for full health (11111), with 1136 (36.3%) of all predicted health states being worse than dead. Mobility had the largest impact on health state preference values. This is the first value set for the EQ-5D-5L based on social preferences obtained from a nationally representative sample in Egypt or any Arabic-speaking country. The value set can be used as a scoring system for economic evaluations and to improve the quality of health technology assessment in the Egyptian healthcare system.

Cohort profile: indigenous human papillomavirus and oropharyngeal squamous cell carcinoma study - a prospective longitudinal cohort

PurposeOur aims are to: (1) estimate prevalence, incidence, clearance and persistence of oral human papillomavirus (HPV) infection among Indigenous Australians; (2) identify risk factors associated with oropharyngeal squamous cell carcinoma...

Deriving a Preference-Based Measure for People With Duchenne Muscular Dystrophy From the DMD-QoL

ObjectivesThis study generates a preference-based measure for capturing the quality of life of people with Duchenne muscular dystrophy (DMD) from a new measure of quality of life, DMD-QoL. MethodsA health state classification system was derived from the DMD-QoL based on psychometric performance of items, factor analysis, and item response theory analysis. Preferences for health states described by the classification system were elicited using an online discrete choice experiment survey with life years as an additional attribute, from members of the UK general population (n = 1043). Discrete choice experiment data was modeled using a conditional fixed-effects logit model and utility estimates were directly anchored on the 1 to 0 full health-dead scale. ResultsThe health state classification system has 8 dimensions: mobility, difficulty using hands, difficulty breathing, pain, tiredness, worry, participation, and feeling good about yourself. The standard model had mostly statistically significant coefficients and reflected the instrument’s monotonic structure. However, 2 dimensions had inconsistent coefficients (where utility increased as health worsened) and a consistent model was estimated that merged adjacent inconsistent severity levels. The best state defined by the classification system has a value of 1 and the worst state has a value of −0.559. ConclusionThe modeled results enable DMD-QoL-8D utility values to be generated using DMD-QoL or DMD-QoL-8D data to generate QALYs for people with DMD. QALYs can then be used to inform economic models of the cost-effectiveness of interventions in DMD. Future research comparing the psychometric performance of DMD-QoL-8D to existing generic preference-based measures, including EQ-5D-5L, is recommended.

Bayesian modeling of health state preferences: could borrowing strength from existing countries’ valuations produce better estimates

Valuations of preference-based measure such as EQ-5D and/or SF6D have been conducted in different countries. There is potential to borrow strength from existing countries’ valuations to generate better representative utility estimates. This is explored using two case studies modelling UK data alongside Japan samples to generate Japan estimates. Data from two SF-6D valuation studies were analyzed, where using similar standard gamble protocols, values for 241 and 249 states were devised from representative samples of Japan and UK general adult populations, respectively. Two nonparametric Bayesian models were applied to estimate a Japan value set, where the UK results were used as informative priors in the first model and subsets of the Japan data set for 25 and 50 health states were modelled alongside the full UK data set in the second. Generated estimates were compared to a Japan value set estimated using Japan values alone using different prediction criterion. The results allowed the UK data to provide significant prior information to the Japan analysis by generating better estimates than using Japan data alone. Also, using Japan data elicited for 50 health states alongside the existing UK data produces roughly similar predicted valuations as the Japan data by itself. The promising results suggest that the existing preference data could be combined with data from a valuation study in a new country to generate preference weights, thus making own country value sets more achievable for low–middle income countries. Further research and application to other countries and preference-based measures are encouraged.

The EQ-5D-5L Valuation Study in Egypt.

IntroductionNo value sets exist for either the EQ-5D-3L or the EQ-5D-5L in Egypt, despite local pharmacoeconomic guidelines recommending the use of the EQ-5D to derive utility. Most published Egyptian economic evaluation studies have used utility values from other published studies and systematic reviews.ObjectiveOur objective was to develop an Egyptian EQ-5D-5L value set using the international EuroQol standardized protocol (EQ-VT-2.1).MethodsAdult Egyptian participants were recruited from public places using multi-stratified quota sampling based on age, sex, and geographical distribution. Two elicitation techniques were applied: the composite time trade-off (cTTO) and discrete-choice experiments (DCEs). Before actual data collection, interviewers’ performance was assessed in a pilot phase. Data were modelled using generalized least square, Tobit, heteroskedastic, logit, and hybrid models, and the best fitting model was selected based on the value range between observed and predicted values, logical consistency of the parameters, significance level, and prediction accuracy.ResultsA total of 1378 interviews were conducted, of which 188 were excluded because they were incomplete or did not comply with protocol, 216 were pilot interviews, and 974 were included in the final analysis. The heteroskedastic model (model 4) based on the cTTO data was selected as the preferred model to generate the value set. Values ranged from − 0.93 for the worst health state (55555) to 1 for full health (11111), with 1136 (36.3%) of all predicted health states being worse than dead. Mobility had the largest impact on health state preference values.ConclusionThis is the first value set for the EQ-5D-5L based on social preferences obtained from a nationally representative sample in Egypt or any Arabic-speaking country. The value set can be used as a scoring system for economic evaluations and to improve the quality of health technology assessment in the Egyptian healthcare system.

Discrete choice experiments or best-worst scaling? A qualitative study to determine the suitability of preference elicitation tasks in research with children and young people

BackgroundOrdinal tasks are increasingly used to explore preferences for health states. This study aimed to determine the suitability of two ordinal preference elicitation tasks (discrete choice experiments (DCE) and best-worst scaling (BWS)) for use with children and young people to generate health state utility values. The study explored children’s understanding, the relationship between their age and level of understanding, and how many tasks they felt they could complete.MethodsChildren aged 11–16 years were recruited from a secondary school in South Yorkshire, UK. Participants were asked to ‘think aloud’ as they completed a computer-based survey that contained both DCE and BWS tasks relating to dental caries (tooth decay) health states. Health states involved descriptions of the impact of tooth decay on children’s daily lives. One-to-one semi-structured interviews were then held with participants, with use of a topic guide. Qualitative data were transcribed verbatim and analysed thematically.ResultsA total of 33 children (12 male, 21 female) participated, comprising 5–6 children from each school year group. Children expressed a preference for BWS and demonstrated a better understanding of these tasks than DCE. There was no clear relationship between children’s level of understanding and age. Children felt they could manage between 8 and 10 BWS tasks comfortably.ConclusionThis study suggests that BWS tasks are the most appropriate type of preference elicitation task to value health states for children and young people aged 11–16 years to complete.

Evidence of a disability paradox in patient‐reported outcomes in haemophilia

IntroductionPeople with inherited and long‐term conditions such as haemophilia have been shown to adapt to their levels of disability, often reporting better quality of life (QoL) than expected from the general population (the disability paradox).AimTo investigate the disability paradox in people with haemophilia in the United States by examining preference differences in health state valuations versus the general population.MethodsWe conducted a discrete choice experiment including duration to capture valuations of health states based on patient‐reported preferences. Participants indicated their preferences for hypothetical health states using the EQ‐5D‐5L, where each participant completed 15 of the 120 choice tasks. Response inconsistencies were evaluated with dominated and repeated scenarios. Conditional‐logit regressions with random sampling of the general population responses were used to match the sample of patients with haemophilia. We compared model estimates and derived preferences associated with EQ‐5D‐5L health states.ResultsAfter removing respondents with response inconsistencies, 1327/2138 (62%) participants remained (177/283 haemophilia; 1150/1900 general population). Patients with haemophilia indicated higher preference value for 99% of EQ‐5D‐5L health states compared to the general population (when matched on age and gender). The mean health state valuation difference of 0.17 indicated a meaningful difference compared to a minimal clinically important difference threshold of 0.07. Results were consistent by haemophilia type and severity.ConclusionOur findings indicated the presence of a disability paradox among patients with haemophilia, who reported higher health states than the general population, suggesting the impact of haemophilia may be underestimated if general population value sets are used.

Assessing the Impact of EQ-5D Country-specific Value Sets on Cost-utility Outcomes.

To assess the impact of EQ-5D country-specific value sets on cost-utility outcomes. Data from 2 randomized controlled trials on low back pain (LBP) and depression were used. 3L value sets were identified from the EuroQol Web site. A nonparametric crosswalk was employed for each tariff to obtain the likely 5L values. Differences in quality-adjusted life years (QALYs) between countries were tested using paired t tests, with United Kingdom as reference. Cost-utility outcomes were estimated for both studies and both EQ-5D versions, including differences in QALYs and cost-effectiveness acceptability curves. For the 3L, QALYs ranged between 0.650 (Taiwan) and 0.892 (United States) in the LBP study and between 0.619 (Taiwan) and 0.879 (United States) in the depression study. In both studies, most country-specific QALY estimates differed statistically significantly from that of the United Kingdom. Incremental cost-effectiveness ratios ranged between &OV0556;2044/QALY (Taiwan) and &OV0556;5897/QALY (Zimbabwe) in the LBP study and between &OV0556;38,287/QALY (Singapore) and &OV0556;96,550/QALY (Japan) in the depression study. At the NICE threshold of &OV0556;23,300/QALY (≈£20,000/QALY), the intervention's probability of being cost-effective versus control ranged between 0.751 (Zimbabwe) and 0.952 (Taiwan) and between 0.230 (Canada) and 0.396 (Singapore) in the LBP study and depression study, respectively. Similar results were found for the 5L, with extensive differences in ICERs and moderate differences in the probability of cost-effectiveness. This study indicates that the use of different EQ-5D country-specific value sets impacts on cost-utility outcomes. Therefore, to account for the fact that health state preferences are affected by sociocultural differences, relevant country-specific value sets should be used.

Frailty state utility and minimally important difference: findings from the North West Adelaide Health Study.

frailty is a dynamic condition for which a range of interventions are available. Health state utilities are values that represent the strength of an individual's preference for specific health states, and are used in economic evaluation. This is a topic yet to be examined in detail for frailty. Likewise, little has been reported on minimally important difference (MID), the extent of change in frailty status that individuals consider to be important. to examine the relationship between frailty status, for both the frailty phenotype (FP) and frailty index (FI), and utility (preference-based health state), and to determine a MID for both frailty measures. population-based cohort of community-dwelling Australians. in total, 874 adults aged ≥65years (54% female), mean age 74.4 (6.2)years. frailty was measured using the FP and FI. Utilities were calculated using the short-form 6D health survey, with Australian and UK weighting applied. MID was calculated cross-sectionally. for both the FP and FI, frailty was significantly statistically associated (P< 0.001) with lower utility in an adjusted analysis using both Australian and UK weighting. Between-person MID for the FP was identified as 0.59 [standard deviation (SD) 0.31] (anchor-based) and 0.59 (distribution-based), whereas for the FI, MID was 0.11 (SD 0.05) (anchor-based) and 0.07 (distribution-based). frailty is significantly associated with lower preference-based health state utility. Frailty MID can be used to inform design of clinical trials and economic evaluations, as well as providing useful clinical information on frailty differences that patients consider important.

Using Eye-Tracking Technology with Older People in Memory Clinics to Investigate the Impact of Mild Cognitive Impairment on Choices for EQ-5D-5L Health States Preferences.

Population ageing is a phenomenon taking place in almost every global region. Current estimates indicate that 10-20% of older people in developed countries have mild cognitive impairment (MCI), with these percentages predicted to rise markedly by 2050. Our objective was to apply eye-tracking technology to investigate the information processes adopted by older people with and without MCI in determining preferences for health states in the five-level EuroQol-5 Dimensions (EQ-5D-5L) instrument. Older people (aged ≥ 65years; including both patients and family carers) attending outpatient memory clinics in Southern Adelaide between July 2017 and June 2018, competent to read and converse in English and with a Mini-Mental State Examination (MMSE) cognition score of ≥ 19 were invited to participate. In total, 52 people met the inclusion criteria, of whom 20 (38%) provided informed consent and fully participated. Participants were categorised into two subgroups (each n = 10) for comparison based upon established MMSE cognition thresholds (19-23, lower MMSE indicative of MCI; ≥ 24, higher MMSE indicative of good cognition). A discrete-choice experiment (DCE) comprising a series of pairwise choices between alternative EQ-5D-5L health states of varying survival duration with differential levels of task complexity (approximated by the degree of attribute level overlap in each choice), was administered as a face-to-face interview with the participant wearing an eye-tracking device. Attribute non-attendance (ANA) was higher for the lower MMSE subgroup than for the higher MMSE subgroup, although these differences were generally not statistically significant. ANA remained relatively low and consistent for participants with good cognition regardless of task complexity. In contrast, ANA increased notably in participants exhibiting MCI, increasing from 10% on average per participant in the lower MMSE subgroup with five attribute level overlap to 23% on average per participant in the lower MMSE subgroup with zero attribute level overlap. This exploratory study provided important insights into the information processes adopted by older people with varying levels of cognitive functioning when choosing between alternative EQ-5D-5L health states of varying survival duration and specifically the relationships between cognitive capacity, task complexity and the extent of ANA. Recent advances in econometric modelling of health state valuation data have demonstrated the added value of capturing ANA information as this can be accounted for in the DCE data analysis, thereby improving the precision of model estimates. Eye-tracking technology can usefully inform the design, conduct and econometric modelling of DCEs, driving the inclusion of this rapidly growing population traditionally excluded from preference-elicitation studies of this nature.

Elicitation of Norwegian EQ-5D-5L values for hypothetical and experience-based health states based on the EuroQol Valuation Technology (EQ-VT) protocol

IntroductionNorway is one of several European countries that lacks a national value set and scoring algorithm for the EuroQol five dimensions (EQ-5D). Recent studies have found differences between countries in...

Transforming discrete choice experiment latent scale values for EQ-5D-3L using the visual analogue scale

BackgroundDiscrete choice experiments (DCEs) are widely used to elicit health state preferences. However, additional information is required to transform values to a scale with dead valued at 0 and full health valued at 1. This paper presents DCE-VAS, an understandable and easy anchoring method with low participant burden based on the visual analogue scale (VAS).MethodsResponses from 1450 members of the UK general public to a discrete choice experiment (DCE) were analysed using mixed logit models. Latent scale valuations were anchored to a full health = 1, dead = 0 scale using participants’ VAS ratings of three states including the dead. The robustness of results was examined. This included a filtering procedure with the influence each individual respondent had on valuation being calculated, and those whose influence was more than two standard deviations away from the mean excluded.ResultsCoefficients in all models were in the expected direction and statistically significant. Excluding respondents who self-reported not understanding the VAS task did not significantly influence valuation, but excluding a small number who valued 33333 extremely low did. However, after eight respondents were removed via the filtering procedure, valuations were robust to removing other participants.ConclusionDCE-VAS is a feasible way of anchoring DCE results to a 0–1 anchored scale with low additional respondent burden.

Worse Than Death: Survey of Public Perceptions of Disability Outcomes After Hypothetical Traumatic Brain Injury.

The aim of this study was to determine the health utility states of the most commonly used traumatic brain injury (TBI) clinical trial endpoint, the Extended Glasgow Outcome Scale (GOSE). Health utilities represent the strength of one's preferences under conditions of uncertainty. There are insufficient data to indicate how an individual would value levels of disability after a TBI. This was a cross-sectional web-based online convenience sampling adaptive survey. Using a standard gamble approach, participants evaluated their preferences for GOSE health states 1 year after a hypothetical TBI. The categorical GOSE was studied from vegetative state (GOSE2) to upper good recovery (GOSE8). Median (25th percentile, 75th percentile) health utility values for different GOSE states after TBI, ranging from -1 (worse than death) to 1 (full health), with 0 as reference (death). Of 3508 eligible participants, 3235 (92.22%) completed the survey. Participants rated lower GOSE states as having lower utility, with some states rated as worse than death, though the relationship was nonlinear and intervals were unequal between health states. Over 75% of participants rated a vegetative state (GOSE2, absence of awareness and bedridden) and about 50% rated lower severe disability (GOSE3, housebound needing all-day assistance) as conditions worse than death. In the largest investigation of public perceptions about post-TBI disability, we demonstrate unequally rated health states, with some states perceived as worse than death. Although limited by selection bias, these results may guide future comparative-effectiveness research and shared medical decision-making after neurologic injury.

HOUT-17. UTILITIES OF RARE CANCERS LIKE MALIGNANT PLEURAL MESOTHELIOMA AND GLIOBLASTOMA MULTIFORME - DO THEY COMPARE?

Abstract BACKGROUND Glioblastoma (GBM) is the most aggressive primary brain cancer in adults. Malignant pleural mesothelioma (MPM) is an invasive and generally fatal malignancy of the pleura mainly caused by exposure to asbestos fibers. TTFields treatment has been shown effective in both MPM and GBM with a comparable increase in median overall survival (OS). Differences in utility values however, could significantly influence assessment of cost-effectiveness for MPM and GBM, despite similar clinical efficacy. METHODS We reviewed the published literature adressing health state preference values or health utilities in both indications using a boolean search of the PubMed database. The results were compiled separately for both diseases and then compared to each other. RESULTS Estimates of health states preference values or utilities in GBM all refer to one single publication by the UK NICE. Healthy members of the NHS Value of Health Panel (VoHP) rated a total of nine descriptive health state scenarios using the standard gamble method for preference elicitation. Utilities for MPM were derived at individual patient level from the EQ-5 questionnaire collected during one trial. Other publications do not use specific mesothelioma heath state preference velues but assume applicability of utilities derived from a non small cell lung cancer (NSCLC) population. CONCLUSIONS GBM utilites use different health states for elicitation, while utilities used in MPM were elicited at patient level. GBM utilities can be used in a health state disease model but there are no similar published values for MPM. MPM utilities using the EQ-5 questionnaire however better describe individual utilities and their change during the course of disease. Despite similar costs and clinical efficacy of TTFields treatment for GBM and MPM, the difference in elicitation methods and sources of utilites may lead to significant disparities in cost effectiveness assessment and subsequent adoption of TTFields treatment in different indications.

What Difference Does It Make? A Comparison of Health State Preferences Elicited From the General Population and From People With Multiple Sclerosis

BackgroundA major debate in the quality-adjusted life-year (QALY) literature concerns whose preferences should be used to estimate health state values (HSVs) and to calculate QALYs. ObjectivesThis study explores differences between public and patient values for multiple sclerosis (MS) health states, described using an MS-specific classification system (Multiple Sclerosis Impact Scale–8 Dimensions [MSIS-8D]). MethodsThe MSIS-8D is an existing preference-based measure of health-related quality of life in MS, which has 2 tariffs of HSVs, based on the preferences of a representative sample of the UK general population (n = 1702) and of people with MS living in the United Kingdom (n = 1635), elicited using the time trade-off technique. Here, we explore differences between HSVs by sample type, using descriptive statistics and multivariate regression methods. ResultsOverall, the survey of people with MS produced significantly higher HSVs; estimated values ranged from 0.079 to 0.883 for the general population survey and from 0.138 to 0.894 for the MS survey. Differences in HSVs were more pronounced for severe health states. The difference between patient and public values varied across the dimensions of the MSIS-8D. People with MS placed greater importance on cognition than the general population, leading to lower HSVs when impairment was at a worse level; the reverse was true for the daily activities, fatigue, and depression dimensions. ConclusionsWe identified significant differences in HSVs by sample type. Using patient rather than public values may influence the results of economic evaluations, depending on the dimensions of health-related quality of life affected by the intervention being assessed, and may therefore have important consequences for reimbursement decisions.

Effect of Reflection and Deliberation on Health State Values: A Mixed-Methods Study

BackgroundHealth economists ask members of the general public to value health states, but it is recognized that individuals construct their preferences during the valuation tasks. Conventional methods rely on one-off interviews that do not give participants time to reflect and deliberate on their preferences. ObjectiveThis study investigates the effect of reflection and deliberation on health state preferences using the EQ-5D questionnaire and time trade-off valuation method. MethodsA novel concurrent explanatory mixed-methods design is used to investigate the explanation for the quantitative findings. ResultsA total of 57 participants in the United Kingdom valued health states before and after a group-based deliberation exercise. There were large changes in health state values at the individual level, but the changes canceled out at the aggregate level. The mixed-methods findings suggest deliberation did not reveal new information or reduce inconsistencies in reasoning but rather focused on an exchange of personal subjective beliefs. In cases of disagreement, the participants accepted but did not adopt other participants' opinions. Participants remained uncertain about the relevance of their experiences and about their values. ConclusionsThe evidence suggests that reflection and deliberation, as designed in this study, are unlikely to result in large systematic changes of health state values. The uncertainties expressed by participants means future research should investigate whether preferences are informed or whether providing participants with more information helps them construct their preferences with more certainty. The mixed-methods design used is a promising design to help elucidate the reasons for quantitative findings.