General Measure Research Articles

Are We Agreed? Self- Versus Proxy-Reporting of Paediatric Health-Related Quality of Life (HRQoL) Using Generic Preference-Based Measures: A Systematic Review and Meta-Analysis.

ObjectiveThe aim of this study was to examine the level of agreement between self- and proxy-reporting of health-related quality of life (HRQoL) in children (under 18 years of age) using generic preference-based measures.MethodsA systematic review of primary studies that reported agreement statistics for self and proxy assessments of overall and/or dimension-level paediatric HRQoL using generic preference-based measures was conducted. Where available, data on intraclass correlation coefficients (ICCs) were extracted to summarise overall agreement levels, and Cohen’s kappa was used to describe agreement across domains. A meta-analysis was also performed to synthesise studies and estimate the level of agreement between self- and proxy-reported paediatric overall and domain-level HRQoL.ResultsOf the 30 studies included, 25 reported inter-rater agreement for overall utilities, while 17 reported domain-specific agreement. Seven generic preference-based measures were identified as having been applied: Health Utilities Index (HUI) Mark 2 and 3, EQ-5D measures, Child Health Utility 9 Dimensions (CHU9D), and the Quality of Well-Being (QWB) scale. A total of 45 dyad samples were included, with a total pooled sample of 3084 children and 3300 proxies. Most of the identified studies reported a poor inter-rater agreement for the overall HRQoL using ICCs. In contrast to more observable HRQoL domains relating to physical health and functioning, the inter-rater agreement was low for psychosocial-related domains, e.g., ‘emotion’ and ‘cognition’ attributes of both HUI2 and HUI3, and ‘feeling worried, sad, or unhappy’ and ‘having pain or discomfort’ domains of the EQ-5D. Parents demonstrated a higher level of agreement with children relative to health professionals. Child self- and proxy-reports of HRQoL showed lower agreement in cancer-related studies than in non-cancer-related studies. The overall ICC from the meta-analysis was estimated to be 0.49 (95% confidence interval 0.34–0.61) with poor inter-rater agreement.ConclusionThis study provides evidence from a systematic review of studies reporting dyad assessments to demonstrate the discrepancies in inter-rater agreement between child and proxy reporting of overall and domain-level paediatric HRQoL using generic preference-based measures. Further research to drive the inclusion of children in self-reporting their own HRQoL wherever possible and limiting the reliance on proxy reporting of children’s HRQoL is warranted.Supplementary InformationThe online version contains supplementary material available at 10.1007/s40273-022-01177-z.

CORR Insights®: Poor Knee-specific and Generic Patient-reported Outcome Measure Scores at 6 Months Are Associated With Early Revision Knee Arthroplasty: A Study From the Australian Orthopaedic Association National Joint Replacement Registry.

CORR Insights®: Poor Knee-specific and Generic Patient-reported Outcome Measure Scores at 6 Months Are Associated With Early Revision Knee Arthroplasty: A Study From the Australian Orthopaedic Association National Joint Replacement Registry.

Progress toward a performance measure for mental health based on a generic patient- reported outcome measure: Findings from the Veterans Outcome Assessment survey

We report on studies conducted to develop outcome-based performance measures (PROM-PMs) based on generic patient-reported outcome measures (PROMs) that could support strategies for quality improvement applicable to all patients in a mental health system. Data were from the Veterans Outcome Assessment Survey at baseline and three months for the Mental Component Score (MCS-12), a widely used measure of mental health-related quality of life, for 15,540 outpatients beginning treatment in General Mental Health clinics in 140 Veterans Affairs (VA) facilities. Mental health diagnoses from medical records were coded using hierarchical categories. Mental health staffing levels and quality measures were from administrative data. Changes in MCS-12 scores were associated with demographics, baseline scores, and diagnostic categories; in fully adjusted models, differences between facilities accounted for only 0.5% of the total variance between patients. There were small but significant associations of both baseline and changes in MCS-12 scores with staffing levels and administrative measures of the quality of care that support the potential value of adjusted measures of changes in MCS-12 as a PROM-PM. Remaining issues include the low proportion of variability that can be attributed to differences between facilities and the associations of staffing and quality with possible case-mix adjustment variables.

Semi-discrete optimal transport: hardness, regularization and numerical solution

Semi-discrete optimal transport problems, which evaluate the Wasserstein distance between a discrete and a generic (possibly non-discrete) probability measure, are believed to be computationally hard. Even though such problems are ubiquitous in statistics, machine learning and computer vision, however, this perception has not yet received a theoretical justification. To fill this gap, we prove that computing the Wasserstein distance between a discrete probability measure supported on two points and the Lebesgue measure on the standard hypercube is already #P-hard. This insight prompts us to seek approximate solutions for semi-discrete optimal transport problems. We thus perturb the underlying transportation cost with an additive disturbance governed by an ambiguous probability distribution, and we introduce a distributionally robust dual optimal transport problem whose objective function is smoothed with the most adverse disturbance distributions from within a given ambiguity set. We further show that smoothing the dual objective function is equivalent to regularizing the primal objective function, and we identify several ambiguity sets that give rise to several known and new regularization schemes. As a byproduct, we discover an intimate relation between semi-discrete optimal transport problems and discrete choice models traditionally studied in psychology and economics. To solve the regularized optimal transport problems efficiently, we use a stochastic gradient descent algorithm with imprecise stochastic gradient oracles. A new convergence analysis reveals that this algorithm improves the best known convergence guarantee for semi-discrete optimal transport problems with entropic regularizers.

Psychometric properties of the Spanish version of the EuroQol-5D-5L in previously hospitalized COVID-19 survivors with long COVID

The EuroQol 5-dimensions 5-levels (EQ-5D-5L) is a generic patient-reported outcome measures (PROM) used for evaluating health-related quality of life (HRQoL). No data on its psychometric properties in COVID-19 survivors is available. We aimed to describe internal consistency, test–retest reliability, and construct validity of the EQ-5D-5L in people with long-COVID. Ninety-three (n = 93) individuals previously hospitalized due to COVID-19 with post-COVID symptoms completed the EQ-5D-5L questionnaire twice one year after hospital discharge in a three-week interval. Internal consistency (Cronbach alpha and Omega value), test–retest reliability (kappa and ICC2,1) and construct validity (factor analysis), and floor/ceiling effects were calculated. No ceiling effect was observed in any dimension whereas the floor effect ranged from 53.76 to 94.62%. The overall Cronbach’s α value was 0.75 (95%CI 0.64–0.83) and the Omega ω value was 0.77 (95%CI 0.66–0.84), showing good internal consistency of the questionnaire. Further, Cronbach’s alpha values the of each dimension ranged from 0.63 to 0.77 whereas those for Omega values ranged from 0.70 to 0.79. The test–retest reliability of the total score was excellent (ICC2,1 0.86, 95%CI 0.798–0.911). The agreement percentage ranged from 85.13 to 96.77%; but kappa coefficients ranged from fair (κ: 0.37) to good (κ: 0.61). The factor analysis showed factor loadings from 0.585 to 0.813 supporting good construct validity. The EQ-5D-5L has good psychometric properties to be used as a PROM to assess HRQoL in hospitalized COVID-19 survivors with long-COVID.

Is the combination of behavioral activation and attention training technique effective to reduce depressive symptomatology? A multiple case study.

BackgroundThis study tested whether the combination of BATD and Attention Training Technique (ATT) is effective to reduce depressive symptomatology and investigate the mechanisms of action underlying the effectiveness of treatment with a multiple N-of-1 trials.MethodsNine adults with depressive symptoms were randomly included in three different combinations of BATD and ATT, concurrent in Condition 1 and sequential in Conditions 2 and 3 (ATT followed by BATD and BATD followed by ATT, respectively). The sequential components allow investigating the specific changes that occur during the two distinct treatment phases. Multiple self-report and pre–post-assessments were conducted on generic mental health measures (depressive symptoms, life functioning, mood, and well-being) and intervention-specific measures (behavioral activation, behavioral avoidance, self-focused attention, cognitive control and rumination), with two-week and three-month follow-up assessments. We also measured treatment adherence with treatment attendance, homework compliance and a clinical interview.ResultsParticipants’ attendance, homework compliance and satisfaction were acceptable in the three conditions, with higher adherence in Condition 1 and Condition 3. Eight participants out of nine reported a reduction in depressive symptomatology and five an improvement in well-being. Most of their progress was maintained 2 weeks after the intervention but not 3 months later. Conditions 1 and 2 seemed to be associated with a higher response to generic mental health measures in comparison with Condition 3. The three conditions were not associated with consistent changes in intervention-specific measures, except for rumination with five participants out of nine reporting an improvement in rumination immediately after the intervention and eight participants 2 weeks after the intervention. The concurrent format was associated with a better improvement in rumination immediately after the intervention. No specific changes of self-focused attention and rumination characterized ATT, and no specific changes of behavioral activation, behavioral avoidance and rumination characterized BATD.ConclusionOur three interventions were judged acceptable and showed positive short-term benefit for generic mental health measures and rumination maintained 2 weeks later, but not 3 months later. Results suggest that five sessions of concurrent treatment could be a better option than sequential formats. However, our data did not support the specificity of ATT and BATD treatments.Clinical Trial Registration: This trial was previously registered with the ClinicalTrials.gov NCT04595539 registration number and the title “Does Attention Training Technique Enhance the Effectiveness of Behavioral Activation Treatment for Depression: A Multiple Baseline Study.”

China Health Related Outcomes Measures (CHROME): Development of a New Generic Preference-Based Measure for the Chinese Population.

Background and ObjectivesExisting generic preference-based measures were all developed in Western countries. Evidence shows that the Chinese population may have different perceptions about health and health-related quality of life. This study aimed at developing a descriptive system of a new generic preference-based measure under the initiative of China Health Related Outcomes Measures (CHROME).MethodsQualitative data were collected through semi-structured interviews conducted in-person or online. Respondents were recruited from both the general public and populations with chronic diseases. Open-ended questions about the respondent’s perception of general health and important aspects of health-related quality of life were asked. Probing questions based on a systematic review of existing generic preference-based measures were also used. The framework analysis was used to synthesize the qualitative data. Candidate items for the descriptive system were selected following the ISPOR and COSMIN guidelines. Expert panel review and cognitive debriefings were conducted for further revisions.ResultsQualitative interviews were conducted among 68 respondents, with 48.5% male and a mean age of 47.8 years (range 18–81 years). In total, 1558 codes were identified and then aggregated to 31 sub-themes and corresponding six themes to inform the development of the initial version of the descriptive system. Feedback from the expert panel survey and meeting (n = 15) and the cognitive debriefing interviews (n = 30) was incorporated into the revised version of the measure. Finally, the generic version of CHROME (CHROME-G) included 12 items across six domains, namely, pain, fatigue, appetite, mobility, vision, hearing, sleeping, daily activities, depression, worry, memory, and social interactions. The descriptive system used a mix of four-level and five-level response options and a 7-day recall period.ConclusionsThe CHROME-G is the first generic preference-based measure to be developed based on the inputs from the Chinese populations.Supplementary InformationThe online version contains supplementary material available at 10.1007/s40273-022-01151-9.

Baseline health-related quality of life predicts falls: a secondary analysis of a randomized controlled trial.

Among older adults, health-related quality of life (HRQoL) and falls are associated. Generic patient-reported outcomes measures (PROMs) assess individual's HRQoL. The role for PROMs, a potential tool for predicting subsequent falls, remains under-explored. Our primary aim was to determine whether a baseline PROMs assessment of HRQoL may be a useful tool for predicting future falls. A secondary analysis of a 12-month randomized clinical trial (RCT) of a home-based exercise program among 344 adults (67% female), aged ≥ 70years, with ≥ 1 falls in the prior year who were randomized (1:1) to either a home-based exercise program (n = 172) or usual care (n = 172). A negative binomial regression model with total falls count as the dependent variable evaluated the main effect of the independent variable-baseline HRQoL (measured by the Short-Form-6D)-controlling for total exposure time and experiment group (i.e., exercise or usual care) for the total sample. For the usual care group alone, the model controlled for total exposure time. For the total sample, the rate of subsequent total falls was significantly predicted by baseline HRQoL (IRR = 0.044; 95% CI [0.005-0.037]; p = .004). For the usual care group, findings were confirmed with wider confidence intervals and the rate of prospective total falls was significantly predicted by baseline HRQoL (IRR = 0.025; 95% CI [0.001-0.909]; p = .044). These findings suggest the ShortForm-6D should be considered as part of falls prevention screening strategies within a Falls Prevention Clinic setting. Trial Registrations ClinicalTrials.gov Protocol Registration System. Identifier: NCT01029171; URL: https://clinicaltrials.gov/ct2/show/NCT01029171 . Identifier: NCT00323596; URL: https://clinicaltrials.gov/ct2/show/NCT00323596 .

Relationship between generic instruments used to measure healthrelated quality of life same or different

Abstract Funding Acknowledgements Type of funding sources: Public grant(s) – National budget only. Main funding source(s): The Swedish research Council for Medicine and health - VR Swedish Research Council for health, working life and welfare - FORTE Background Health-related quality of life (HRQoL) is one and possibly the most important follow-up measure that is used to assess outcomes after long term and critical illness, such as heart failure. There is today an abundance of available generic measures relevant for all types of diseases and health states, and therefore suitable in heterogenous patient cohorts. Globally, two of the most common generic measures of HRQoL in use today are the EuroQol-5D (EQ-5D) and the RAND-36/36-item short-form SF-36. Another commonly used instrument is Cantril’s ladder of life. With the purpose to create a valid but not burdensome survey before and after an intervention in a cohort of former critically ill patients after a period of cardiac care, the question was raised what instrument to choose, and if the instruments correlates. If so, not all items have to be used if they measure the same outcome. Purpose To examine the relationship between different generic instruments for HRQoL in patients with heart failure. Methods For EQ-5D the separate five separate dimensions, the index from the combined dimensions, and a visual analog scale (VAS) can be used. For RAND-36 the eight dimensions created from 35 of the 36 questions, and the extern item as a single item called "Health Transition" can be used. Finally, for the Ladder of life the three questions can be used as separate items. The items chosen and measured in a cohort of former critically ill cardiac patients (n=246) were EQ-5D VAS, EQ-index, RAND-36 health transition question, and ladder of life question 1 and 3. Higher scores indicates higher perceived HRQoL on the scales except for RAND-36. The patients had a mean age of 66 years (SD 11.8), 67.3% (n=165) were men. The most common diagnoses in the sample were heart failure 68% (n=148), diabetes 22% (n=31), cancer (17% (n=36), and pulmonary disease 14% (n=31). The Spearman´s rank correlation was used to analyze the strength of association in the nonparametric data. Results Up to moderately strong correlation was seen between the items (see table). The strongest correlation was found between the EQ-5D VAS and RAND-36 Health Transition item (-0,629 (p=0.01)), followed by both RAND-36 and EQ-5D VAS and the ladder of life question "Where on the ladder do you feel you personally stand right now" (0,615 (p=0.01)) and (0.606 (p=0.01)) respectively. The two ladder of life questions correlated moderately (0.689, (p=0.01)). Conclusions Albeit the same focus area, the chosen general instruments, and items for measuring HRQoL was not strongly correlated indicated that they do not measure the exact same concepts and dimension. This is of importance when chosen instruments for HRQoL follow-up. There might be a need to combine more than one generic instrument considering the balance between the burden for the patient and the purpose and depth of the investigation. Further conceptual consideration regarding to these different generic instruments are warranted.

Estimating the association between physical activity and health-related quality of life in individuals with multiple sclerosis

BackgroundHigher levels of total physical activity (PA) are associated with better health-related quality of life (HRQOL) in individuals with multiple sclerosis (MS). The benefits of PA across the activity continuum have not been well-studied. The goal of this study was to compare the associations between total PA, strenuous PA, moderate PA, and mild PA and HRQOL in a large cohort of individuals with MS using both generic and neurologic disease-specific questionnaires. Longitudinal changes in PA and HRQOL over two years were also examined MethodsSubjects enrolled in SysteMS completed the Godin Leisure Time Exercise Questionnaire (GLTEQ) to measure PA. Subjects also completed generic (SF-36) and neurologic disease-specific (NeuroQoL) HRQOL measures. GLTEQ and HRQOL measures were administered at baseline and 24 months. The associations between the GLTEQ total leisure activity (TLA), strenuous PA, moderate PA and mild PA and scores on NeuroQoL and SF-36 were estimated using Spearman's correlation coefficient and partial Spearman's correlation coefficient adjusting for age, sex and Expanded Disability Status Scale (EDSS) measured by a provider. To further investigate the associations between mild PA and HRQOL measures, the associations between mild PA and HRQOL were estimated in participants who reported no moderate or strenuous PA in the last week. The changes in GLTEQ TLA scores and each component score were compared to the changes in NeuroQoL and SF-36 over 24 months using Spearman's correlation coefficient and partial Spearman's correlation coefficient adjusting for age, sex and EDSS. ResultsStatistically significant weak correlations were observed between GLTEQ TLA and NeuroQoL and SF-36 domains, with higher levels of TLA being associated with better HRQOL outcomes. After adjusting for age, sex and EDSS, all correlations were attenuated. Strenuous and moderate levels of PA were similarly associated with many HRQOL outcomes, but mild PA was only weakly correlated with NeuroQoL Lower Extremity Function. There was limited change in PA over 24 months. In a subgroup of participants who reported mild PA, but no moderate or strenuous PA, there were no significant associations with NeuroQoL or SF-36 domains at baseline, but increases in mild PA over two years were moderately associated with improvement on NeuroQoL Upper Extremity Function and SF-36 Mental Health and Mental Component Summary. ConclusionThere were weak associations between TLA and HRQOL across a wide range of HRQOL variables. In addition, both strenuous PA and moderate PA were weakly associated with many HRQOL outcomes, but mild PA was only associated with lower extremity function. Increases in mild PA in a subgroup of individuals who reported no strenuous or moderate PA at baseline were associated with improvements in HRQOL at 24 months. These findings suggest that programs aimed at increasing PA across the activity continuum may lead to improvements in multiple areas of HRQOL in individuals with MS.

Concerns about the Responsiveness of Generic Measures and the Search for a "Minimally" Important Change: Today's PRO Red Herrings.

Concerns about the Responsiveness of Generic Measures and the Search for a "Minimally" Important Change: Today's PRO Red Herrings.

Estimation of a Canadian preference-based scoring algorithm for the Veterans RAND 12-Item Health Survey: a population survey using a discrete-choice experiment.

Background:The Veterans RAND 12-Item Health Survey (VR-12) is a generic patient-reported outcome measure derived from the widely used 36- and 12-item Short Form Health Surveys. We aimed to estimate a Canadian preference-based scoring algorithm for the VR-12, enabling the derivation of health utility values for generating quality-adjusted life years (QALYs).Methods:We conducted a discrete-choice experiment in a sample of the Canadian population in January and February 2019. Participants — recruited from a consumer research panel — completed an online survey, in English or French, that included 11 discrete-choice questions, each comprising 2 health profiles. We defined the health profiles using 8 VR-12 items and a duration attribute. Using conditional logit regressions, where each level of the respective VR-12 items was interacted with duration, we applied the coefficients to estimate health utility values interpretable on a scale of 0 (dead) to 1 (full health). Negative values reflect states considered worse than dead.Results:A total of 3380 individuals completed the survey. Of these, 1688 (49.9%) were females, and 3101 (91.7%) completed the English version of the survey. Across all models, “feel downhearted and blue all of the time” and “pain interferes with your normal work extremely” were associated with the largest decrements in health utility. Excluding the 685 respondents (20.3%) who provided inconsistent responses had a negligible effect on the results. The recommended model, weighted to match population demographics, had health utility values ranging from −0.589 to 1.000.Interpretation:Health utility values that reflect the preferences of the Canadian population can now be derived from responses to the VR-12. These values can be used to generate QALYs in future analyses.

Poor Knee-specific and Generic Patient-reported Outcome Measure Scores at 6 Months Are Associated With Early Revision Knee Arthroplasty: A Study From the Australian Orthopaedic Association National Joint Replacement Registry.

The ability to identify which patients are at a greater risk of early revision knee arthroplasty has important practical and resource implications. Many international arthroplasty registries administer patient-reported outcome measures (PROMs) to provide a holistic assessment of pain, function, and quality of life. However, few PROM scores have been evaluated as potential indicators of early revision knee arthroplasty, and earlier studies have largely focused on knee-specific measures. This national registry-based study asked: (1) Which 6-month postoperative knee-specific and generic PROM scores are associated with early revision knee arthroplasty (defined as revision surgery performed 6 to 24 months after the primary procedure)? (2) Is a clinically important improvement in PROM scores (based on thresholds for the minimal important change) after primary knee arthroplasty associated with a lower risk of early revision? Preoperative and 6-month postoperative PROM scores for patients undergoing primary knee arthroplasty were sourced from the Australian Orthopaedic Association National Joint Replacement Registry (AOANJRR) and Arthroplasty Clinical Outcomes Registry National. Between January 2013 and December 2020, PROM data were available for 19,402 primary total knee arthroplasties; these data were linked to AOANJRR data on revision knee arthroplasty. Of these, 3448 procedures were excluded because they did not have 6-month PROM data, they had not reached the 6-month postoperative point, they had died before 24 months, or they had received revision knee arthroplasty before the 6-month PROMs assessment. After these exclusions, data were analyzed for 15,954 primary knee arthroplasties. Associations between knee-specific (knee pain, Oxford Knee Score, and 12-item Knee injury and Osteoarthritis Outcome Score [KOOS-12]) or generic PROM scores (5-level EuroQol quality of life instrument [EQ-5D], EQ VAS, perceived change, and satisfaction) and revision surgery were explored using t-tests, chi-square tests, and regression models. Ninety-four revision procedures were performed at 6 to 24 months, most commonly for infection (39% [37 procedures]). The early revision group was younger than the unrevised group (mean age 64 years versus 68 years) and a between-group difference in American Society of Anesthesiologists (ASA) grade was noted. Apart from a small difference in preoperative low back pain for the early revision group (mean low back pain VAS 4.2 points for the early revision group versus 3.3 points for the unrevised group), there were no between-group differences in preoperative knee-specific or generic PROM scores on univariate analysis. As the inclusion of ASA grade or low back pain score did not alter the model results, the final multivariable model included only the most clinically plausible confounders (age and gender) as covariates. Multivariable models (adjusting for age and gender) were also used to examine the association between a clinically important improvement in PROM scores (based on published thresholds for minimal important change) and the likelihood of early revision. After adjusting for age and gender, poor postoperative knee pain, Oxford, KOOS-12, EQ-5D, and EQ VAS scores were all associated with early revision. A one-unit increase (worsening) in knee pain at 6 months was associated with a 31% increase in the likelihood of revision (RR 1.31 [95% confidence interval (CI) 1.19 to 1.43]; p < 0.001). Reflecting the reversed scoring direction, a one-unit increase (improvement) in Oxford or KOOS-12 score was associated with a 9% and 5% reduction in revision risk, respectively (RR for Oxford: 0.91 [95% CI 0.90 to 0.93]; p < 0.001; RR for KOOS-12 summary: 0.95 [95% CI 0.94 to 0.97]; p < 0.001). Patient dissatisfaction (RR 6.8 [95% CI 3.7 to 12.3]) and patient-perceived worsening (RR 11.7 [95% CI 7.4 to 18.5]) at 6 months were also associated with an increased likelihood of early revision. After adjusting for age and gender, patients who did not achieve a clinically important improvement in PROM scores had a higher risk of early revision (RR 2.9 for the knee pain VAS, RR 4.2 for the Oxford Knee Score, RR 6.3 to 8.6 for KOOS-12, and RR 2.3 for EQ-5D) compared with those who did (reference group). Knee-specific and generic PROM scores offer an efficient approach to identifying patients at greater risk of early revision surgery, using either the 6-month score or the magnitude of improvement. These data indicate that surgeons can use single- and multi-item measures to detect a patient-perceived unsuccessful surgical outcome at 6 months after primary knee arthroplasty. Surgeons should be alert to poor PROM scores at 6 months or small improvements in scores (for example, less than 2 points for knee pain VAS or less than 10.5 points for Oxford Knee Score), which signal a need for direct patient follow-up or expedited clinical review. Level III, therapeutic study.

The FACT-8D, a new cancer-specific utility algorithm based on the Functional Assessment of Cancer Therapies-General (FACT-G): a Canadian valuation study

IntroductionUtility instruments are used to assess patients’ health-related quality of life for cost-utility analysis (CUA). However, for cancer patients, the dimensions of generic utility instruments may not capture all the information relevant to the impact of cancer. Cancer-specific utilities provide a useful alternative. Under the auspices of the Multi-Attribute Utility in Cancer Consortium, a cancer-specific utility algorithm was derived from the FACT-G. The new FACT-8D contains eight dimensions: pain, fatigue, nausea, sleep, work, support from family/friends, sadness, and worry health will get worse. The aim of the study was to obtain a Canadian value set for the FACT-8D.MethodsA discrete choice experiment was administered to a Canadian general population online panel, quota sampled by age, sex, and province/territory of residence. Respondents provided responses to 16 choice sets. Each choice set consisted of two health states described by the FACT-8D dimensions plus an attribute representing survival duration. Sample weights were applied and the responses were analyzed using conditional logistic regression, parameterized to fit the quality-adjusted life year framework. The results were converted into utility weights by evaluating the marginal rate of substitution between each level of each FACT-8D dimension with respect to duration.Results2228 individuals were recruited. The analysis dataset included n = 1582 individuals, who completed at least one choice set; of which, n = 1501 completed all choice sets. After constraining to ensure monotonicity in the utility function, the largest decrements were for the highest levels of pain (− 0.38), nausea (− 0.30), and problems doing work (− 0.23). The decrements of the remaining dimensions ranged from − 0.08 to − 0.18 for their highest levels. The utility of the worst possible health state was defined as − 0.65, considerably worse than dead.ConclusionsThe largest impacts on utility included three generic dimensions (i.e., pain, support, and work) and nausea, a symptom caused by cancer (e.g., brain tumours, gastrointestinal tumours, malignant bowel obstruction) and by common treatments (e.g., chemotherapy, radiotherapy, opioid analgesics). This may make the FACT-8D more informative for CUA evaluating in many cancer contexts, an assertion that must now be tested empirically in head-to-head comparisons with generic utility measures.

Using the EQ-5D to measure caregiver health-related quality of life in rare pediatric disease: a study in aromatic L-amino acid decarboxylase deficiency

Aims: To evaluate how well the EQ-5D-5L, a generic preference-based measure of health-related quality of life, captures caregiver burden in a rare pediatric neurotransmitter disease. Materials &amp; methods: Caregivers (n = 14) of individuals with aromatic L-amino acid decarboxylase (AADC) deficiency completed qualitative interviews on their experience as a caregiver, the EQ-5D-5L and a background questionnaire. Qualitative and quantitative data were compared to determine whether there was concordance or discordance in the findings. Results: No caregivers reported problems with mobility and self-care in either the qualitative interviews or on the EQ-5D-5L, and there was general concordance for pain/discomfort and anxiety/depression. However, discordance was found for usual activities, with 79% reporting no problems with this dimension on the EQ-5D-5L, compared with 100% describing substantial limitations during the interviews. Conclusion: The EQ-5D-5L may not be appropriate to evaluate caregiver burden in AADC deficiency, where caregivers' perceptions of “usual activities” differ substantially from the general population.

Comparison of the EQ-5D-Y-5L, EQ-5D-Y-3L and PedsQL in children and adolescents

BackgroundThere is an increased use of Patient-Reported Outcome Measures (PROMs) in children and adolescents. The aim of this study was to compare the feasibility, concurrent validity and known-group validity of the EQ-5D-Y-3L (Y-3L), EQ-5D-Y-5L (Y-5L) and PedsQL self-report PROMs.MethodsFive hundred and fifty children and adolescents, aged 8–15-years, with acute and chronic health conditions and a general population sample were recruited from schools and hospitals in Cape Town South Africa. All respondents self-completed the Y-5L, PedsQL, Self-Rated Health Question and Y-3L. Feasibility of the measures was determined by comparing the number of missing responses. Convergent validity was assessed by Spearman’s and Intra-class correlations on the corresponding items and summary scores respectively. Known-groups validity across health conditions was assessed across the summary scores of the measures with analysis of variance (ANOVA).ResultsThe Y-3L and Y-5L had a total of 1% and 3.5% missing responses compared to 19% on the PedsQL. Similar items on the PedsQL and Y-3L/Y-5L showed high correlations (> 0.5) and related items showed moderate correlations (0.3). PedsQL total score was moderately and significantly associated with Y-3L and Y-5L level sum and VAS scores. The Y-3L and Y-5L level sum and VAS scores showed significant differences between known health groups whereas the PedsQL only showed differences between those with acute and chronic illness.ConclusionThe results of this study show that the Y-3L and Y-5L showed comparable psychometric validity to the PedsQL. When considering the choice between the PedsQL, Y-5L and Y-3L these study results indicate that the EQ-5D-Y instruments (Y-3L and Y-5L) are recommended for studies assessing known-group validity or where missing data should be minimised. The PedsQL generic measure may be preferable in future studies including the general population where a ceiling effect is anticipated. When considering the choice between the Y-5L and the Y-3L there was no systematic difference in the validity between these instruments or between the Y-3L or Y-5L and the PedsQL. Thus, the selection of EQ-5D-Y measures to include in future studies should be guided by the characteristics of the population to be tested.

The different faces of mental illness stigma: Systematic variation of stereotypes, prejudice and discrimination by type of illness.

Mental illness (MI) stigma has been characterized as multi-dimensional including problems of knowledge (stereotypes), attitudes (prejudice) and behavior (discrimination); however, most research practice is predominantly applying unidimensional behavioral measures such as social distance scales. Moreover, specific types of MIs and different forms of discriminatory behaviors are not being differentiated. The Stereotype Content Model predicts that group stereotypes (warmth, competence) are linked with different forms of discriminatory behaviors (harm or facilitation) via emotional prejudices (pity, envy, contempt). The present study sought to establish how differential stereotypic perceptions of MI subgroups elicit distinct forms of behavioral discrimination via emotional prejudices. A community sample (N = 60) was randomly assigned to one of three conditions representing MIs across the warmth-competence stereotype space. Patterns of self-completed measures for stereotypes, emotions and behaviors differed significantly between conditions. The association between stereotypes and behaviors were largely mediated by emotions. Systematic patterns of stereotypic perceptions, emotional prejudices and behavioral discrimination are present for individuals with different types of MIs. Hence, generic measures of discrimination, such as social distance scales, may be misleading. Intervention strategies should consider the systematic variation of the factors involved in stigma, differentiating by type of MI and discriminatory behaviors.

Feasibility and validity of the EQ-5D-3L in the elderly Europeans: a secondary data analysis using SHARE(d) data

PurposeTo determine feasibility and validity of the EQ-5D-3L in the elderly European population.MethodsSecondary data analysis based on the study of health, ageing, and retirement in Europe (SHARE) to determine the percentage of missing items for EQ-5D dimensions and EQ VAS, and to demonstrate convergent/divergent validity with measures included in the SHARE survey. Known-groups validity was tested using literature-based hypotheses. Correlation coefficients and Cohen’s f are reported.ResultsMissing values were below 3% across all EQ-5D dimensions and gender strata, slightly increasing with age. Individuals’ responses to each EQ-5D dimension were related to their ratings of other measures in expected directions. The EQ VAS and all EQ-5D dimensions (except anxiety/depression) moderately to strongly correlated with physical [e.g. number of limitations in activities of daily living (ADL): r = 0.313–0.658] and generic measures [CASP (control, autonomy, self-realization, pleasure)-19 scale, self-perceived health, number of symptoms: r = 0.318–0.622], while anxiety/depression strongly correlated with the EURO-D scale (r = 0.527). Both EQ-5D dimensions and EQ VAS discriminated well between two [or more] groups known to differ [e.g. anxiety/depression discriminated well between persons classified as depressed/not depressed using the EURO-D scale, f = 0.51; self-care differentiated best between individuals without and with 1 + ADL limitations, f = 0.69]. Sociodemographic variables like gender, education, and partner in household were hardly associated with EQ VAS scores (f < 0.25).ConclusionWith item non-response of less than 3%, good discriminatory, and construct properties, the EQ-5D-3L showed to be a feasible and valid measure in the elderly Europeans.

EEG Responses to auditory figure-ground perception

Speech-in-noise difficulty is commonly reported among hearing-impaired individuals. Recent work has established generic behavioural measures of sound segregation and grouping that are related to speech-in-noise processing but do not require language. In this study, we assessed potential clinical electroencephalographic (EEG) measures of central auditory grouping (stochastic figure-ground test) and speech-in-noise perception (speech-in-babble test) with and without relevant tasks. Auditory targets were presented within background noise (16 talker-babble or randomly generated pure-tones) in 50% of the trials and composed either a figure (pure-tone frequency chords repeating over time) or speech (English names), while the rest of the trials only had background noise. EEG was recorded while participants were presented with the target stimuli (figure or speech) under different attentional states (relevant task or visual-distractor task). EEG time-domain analysis demonstrated enhanced negative responses during detection of both types of auditory targets within the time window 150-350 ms but only figure detection produced significantly enhanced responses under the distracted condition. Further single-channel analysis showed that simple vertex-to-mastoid acquisition defines a very similar response to more complex arrays based on multiple channels. Evoked-potentials to the generic figure-ground task therefore represent a potential clinical measure of grouping relevant to real-world listening that can be assessed irrespective of language knowledge and expertise even without a relevant task.

Medial packing and elastic asymmetry stabilize the double-gyroid in block copolymers

Triply-periodic networks are among the most complex and functionally valuable self-assembled morphologies, yet they form in nearly every class of biological and synthetic soft matter building blocks. In contrast to simpler assembly motifs – spheres, cylinders, layers – networks require molecules to occupy variable local environments, confounding attempts to understand their formation. Here, we examine the double-gyroid network phase by using a geometric formulation of the strong stretching theory of block copolymer melts, a prototypical soft self-assembly system. The theory establishes the direct link between molecular packing, assembly thermodynamics and the medial map, a generic measure of the geometric center of complex shapes. We show that “medial packing” is essential for stability of double-gyroid in strongly-segregated melts, reconciling a long-standing contradiction between infinite- and finite-segregation theories. Additionally, we find a previously unrecognized non-monotonic dependence of network stability on the relative entropic elastic stiffness of matrix-forming to tubular-network forming blocks. The composition window of stable double-gyroid widens for both large and small elastic asymmetry, contradicting intuitive notions that packing frustration is localized to the tubular domains. This study demonstrates the utility of optimized medial tessellations for understanding soft-molecular assembly and packing frustration via an approach that is readily generalizable far beyond gyroids in neat block copolymers.