Dataset Information

Developing and testing a cognitive bolt-on for the EQ-5D-Y (Youth).

ABSTRACT:

Purpose

The aim of this study was to develop and test a cognitive dimension as a bolt-on for the German version of the EQ-5D-Y (Youth).

Methods

A literature review and six focus groups with children and adolescents were used to develop the cognitive dimension for the EQ-5D-Y. In a two-phase pretest, the acceptability, feasibility and performance of this dimension were assessed (phase 1: qualitative face-to-face interviews, phase 2: standard pretest in a clinical setting). In total, 280 children and adolescents participated in this study.

Results

School performance, concentration, memory and learning ability represent the most important components of cognitive functioning in children and adolescents. Hence, those components were incorporated into the cognitive dimension of the EQ-5D-Y by adding four items. For children and adolescents living with a rheumatic disorder or type 1 diabetes mellitus, the EQ-5D-Y plus a cognitive bolt-on demonstrated good acceptability, feasibility and performance. The cognitive items improved the explanatory power for the EQ visual analogue scale (EQ-VAS). Factor analysis has shown that a reduction of the cognitive bolt-on into one or two item(s) is justifiable.

Conclusion

By enhancing the EQ-5D-Y with a cognitive bolt-on, we developed an instrument that incorporates current findings on Health-Related Quality of Life (HRQoL) and is suitable for the target population. Empirical results of this study show that cognitive functioning is an important part of HRQoL assessment in children and adolescents. The inclusion of a cognitive dimension in the EQ-5D-Y improves the HRQoL measurement.

SUBMITTER: Ludwig K

PROVIDER: S-EPMC8800913 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:BackgroundGeneric preference-based measures (GPBMs) such as the EQ-5D are valid across many conditions, but in some cases, "bolting on" additional dimensions may improve validity. The selection of "bolt-ons" has been based on the psychometric impact of individual dimensions, but preferences provide another important way to select them. This study aims to test the potential of using pairwise choices to inform the selection of bolt-ons for the EQ-5D-5L.MethodsGeneral population preferences were collected using an online survey of 1040 UK residents. Three EQ-5D-5L health state pairs were selected based on pairs that had a 50:50 split in respondent preferences from a previous pairwise survey. Participants were presented with pairwise choices of EQ-5D-5L health states without and with bolt-ons of hearing, sleep, cognition, energy, and relationships, each added individually. Logistic models were used to assess the impact of bolt-ons, as well as bolt-ons at different severity levels, on the log odds of responders choosing between health states.ResultsPreferences varied according to the bolt-ons and their severity level (only levels 1, 3, and 5 were used). Additions of bolt-ons at level 1 generally resulted in nonstatistically significant differences while additions of bolt-ons at level 3 and level 5 produced a negative and statistically significant impact on preferences for the health state with the bolt-on. At level 5, hearing had the largest impact, followed by cognition, relationships, energy, and sleep. At level 3, cognition produced the largest impact, followed by hearing and sleep with similar impacts, energy, and relationships. This ordering offers information for bolt-on selection, with hearing and cognition appearing as the most important. The weight placed on the different health problems is not constant across severity levels between bolt-ons.ConclusionsPairwise choices provide a cost-effective approach of generating information on preferences to support bolt-on selection.

Project description:PurposeThe EQ-5D is the most widely applied generic preference-based measure (GPBM) of health-related quality of life (HRQoL). Much concern has been raised that its descriptive system is lacking psycho-social dimensions. A recent paper in this journal provided theoretical support for four dimensions to fill this gap. The current paper aims to provide empirical support for these suggested bolt-on dimensions to the EQ-5D.MethodsWe use data from the comprehensive Multi-Instrument-Comparison (MIC) study. The four proposed bolt-on dimensions (Vitality, Sleep, Social Relationships, and Community Connectedness) were selected from the Assessment of Quality of Life (AQoL)-8D. We investigate the relative importance of these four dimensions as compared to the five EQ-5D-5L dimensions on explaining HRQoL (measured by a visual analogue scale; N = 7846) or global life satisfaction (measured by the Satisfaction With Life Scale; N = 8005), using the Shorrocks-Shapely decomposition analysis. Robustness analyses on Vitality was conducted using data from the United States National Health Measurement Study (NHMS) (N = 3812).ResultsAll five EQ-5D-5L dimensions and four bolt-on dimensions significantly explained the variance of HRQoL. Among them, Vitality was found to be the most important dimension with regard to the HRQoL (relative contribution based on the Shorrocks-Shapely decomposition of R2: 23.0%), followed by Usual Activities (15.1%). Self-Care was the least important dimension (relative contribution: 5.4%). As a comparison, when explaining global life satisfaction, Social Relationships was the most important dimension (relative contribution: 24.0%), followed by Anxiety/Depression (23.2%), while Self-Care remained the least important (relative contribution: 1.6%). The importance of the Vitality dimension in explaining HRQoL was supported in the robustness analysis using the NHMS data (relative contribution: 23.7%).ConclusionsWe provide empirical support for complementing the current EQ-5D-5L descriptive system with a coherent set of four bolt-on dimensions that will fill its psycho-social gap. Such an extended health state classification system would in particular be relevant for programme evaluations within the expanding fields of mental health and community care.

Project description:Objective: This study examined the impact of adding two condition-specific bolt-on items to the EQ-5D-5L and assessed their psychometric properties in patients with hemophilia. Methods: The data were obtained from a nationwide cross-sectional online survey of patients with hemophilia in China. Self-reported and proxy-reported data were analyzed separately. Ceiling effect, informativity, and discriminatory power of the EQ-5D-5L with two bolt-on items, dignity (DG), and bleeding (BL), were examined. Spearman's rank correlation (rho) was used to assess the associations of the EQ-5D-5L and two bolt-on items with the Hemophilia Quality of Life Questionnaire for Adults (Haem-A-QoL) and SF-12. Multiple regression analysis was performed to evaluate the explained variance of the EQ-5D-5L and bolt-on items in predicting EQ-VAS scores. Results: A total of 895 patients and 222 caregivers completed the questionnaire. The ceiling effect decreased from 1.9 to 0.6% and 5.9 to 0.9% when using the EQ-5D-5L and the EQ-5D-5L with two bolt-on items among participants with both self- and proxy-completed questionnaires. Both DG and BL were strongly correlated with Haem-A-QoL sum score [rho: DG = 0.64 (patient) vs. 0.66(proxy); BL = 0.49 (patient) vs. 0.31 (proxy)], SF-12 mental component [rho: DG = -0.36 (patient) vs. -0.41 (proxy); BL = -0.53 (patient) vs. -0.57(proxy)], and SF-12 physical component [rho: DG = -0.61 (patient) vs. -0.61 (proxy); BL = -0.35 (patient) vs. -0.39 (proxy)]. Known-group comparisons confirmed that the two bolt-on items had satisfactory discriminatory power. Multiple regression analysis indicated that adding two bolt-on items significantly increased the ability to predict EQ-VAS scores. The adjusted R 2 increased by 8.2 and 8.8% for reports completed by the patients or patients' proxy respondents, respectively. Conclusion: Adding the DG and BL bolt-on items can increase performance on the EQ-5D-5L in patients with hemophilia. A future valuation study will be carried out.

Project description:BackgroundMultiple sclerosis (MS) is an inflammatory, neurodegenerative disease of the central nervous system which results in disability over time and reduced quality of life. To increase the sensitivity of the EQ-5D-5L for psychosocial health, four bolt-on items from the AQoL-8D were used to create the nine-item EQ-5D-5L-Psychosocial. We aimed to externally validate the EQ-5D-5L-Psychosocial in a large cohort of people with MS (pwMS) and explore the discriminatory power of the new instrument with EQ-5D-5L/AQoL-8D.MethodsA large representative sample from the Australian MS Longitudinal Study completed the AQoL-8D and EQ-5D-5L (including EQ VAS) and both instruments health state utilities (HSUs) were scored using Australian tariffs. Sociodemographic/clinical data were also collected. External validity of EQ-5D-5L-Psychosocial scoring algorithm was assessed with mean absolute errors (MAE) and Spearman's correlation coefficient. Discriminatory sensitivity was assessed with an examination of ceiling/floor effects, and disability severity classifications.ResultsAmong 1683 participants (mean age: 58.6 years; 80% female), over half (55%) had moderate or severe disability. MAE (0.063) and the distribution of the prediction error were similar to the original development study. Mean (± standard deviation) HSUs were EQ-5D-5L: 0.58 ± 0.32, EQ-5D-5L-Psychosocial 0.62 ± 0.29, and AQoL-8D: 0.63 ± 0.20. N = 157 (10%) scored perfect health (i.e. HSU = 1.0) on the EQ-5D-5L, but reported a mean HSU of 0.90 on the alternative instruments. The Sleep bolt-on dimension was particularly important for pwMS.ConclusionsThe EQ-5D-5L-Psychosocial is more sensitive than the EQ-5D-5L in pwMS whose HSUs approach those reflecting full health. When respondent burden is taken into account, the EQ-5D-5L-Psychosocial is preferential to the AQoL-8D. We suggest a larger confirmatory study comparing all prevalent multi-attribute utility instruments for pwMS.

Project description:PurposeTo investigate whether the same health state results in the same distribution of responses on the EQ-5D youth and adult descriptive systems.MethodsAdolescents aged 13-18 years with a range of health conditions and from the general school going population were recruited in South Africa (ZA) and Ethiopia (ET). In ZA participants completed the English EQ-5D-3L, EQ-5D-Y-3L and EQ-5D-5L in parallel. Whereas in ET participants completed the Amharic EQ-5D-5L and EQ-5D-Y-5L in parallel. Analysis aimed to describe the transition between youth and adult instruments and not differences between countries.ResultsData from 592 adolescents completing the EQ-5D-3L, EQ-5D-Y-3L and EQ-5D-5L (ZA) and 693 completing the EQ-5D-5L and EQ-5D-Y-5L (ET) were analysed. Adolescents reported more problems on the youth versions compared to the adult version for the dimension of mental health. 13% and 4% of adolescents who reported no problems on the EQ-5D-3L and EQ-5D-5L reported some problems on the EQ-5D-Y-3L respectively. This was less notable with transition between the five level versions with 4% of adolescents reporting more problems on the EQ-5D-Y-5L than the EQ-5D-5L. Very few adolescents reported severe problems (level 3 on the EQ-5D-3L or EQ-5D-Y-3L and level 4 and level 5 on the EQ-5D-5L or EQ-5D-5L) thus there was little variation between responses between the versions. In ZA, discriminatory power, measured on the Shannon's Index, was higher for Y-3L compared to 3L for pain/discomfort (ΔH'=0.11) and anxiety/depression (ΔH'=0.04) and across all dimensions for Y-3L compared to 5L. Similarly, in ET discriminatory power was higher for Y-5L than 5L (ΔH' range 0.05-0.09). Gwet's AC showed good to very good agreement across all paired (ZA) 3L and (ET) 5L dimensions. The summary score of all EQ-5D versions were able to differentiate between known disease groups.ConclusionDespite the overall high levels of agreement between EQ-5D instruments for youth and for adults, they do not provide identical results in terms of health state, from the same respondent. The differences were most notable for anxiety/depression. These differences in the way individuals respond to the various descriptive systems need to be taken into consideration for descriptive analysis, when transitioning between instruments, and when comparing preference-weighted scores.

Project description:Background The adult versions EQ-5D-3L and EQ-5D-5L have been extensive compared. This is not the case for the EQ-5D youth versions. The study aim was to compare the measurement properties and responsiveness of EQ-5D-Y-3L and EQ-5D-Y-5L in paediatric patients. Methods A sample of patients 8–16 years old with different diseases and a wide range of disease severity was asked to complete EQ-5D-Y-3L, EQ-5D-Y-5L, PedsQL Generic Core Scale, and selected, appropriate disease-specific instruments, three times. EQ-5D-Y-3L and EQ-5D-Y-5L were compared in terms of: feasibility, (re-)distribution properties, discriminatory power, convergent validity, test–retest reliability, and responsiveness. Results 286 participating patients suffered from one of the following diseases: major beta-thalassemia, haemophilia, acute lymphoblastic leukaemia, acute illness. Missing responses were comparable between versions of the EQ-5D-Y, suggesting comparable feasibility. The number of patients in the best health state (level profile 11111) was equal in both EQ-5D-Y versions. The projection of EQ-5D-Y-3L scores onto EQ-5D-Y-5L for all dimensions showed that the two additional levels in EQ-5D-Y-5L slightly improved the accuracy of patients in reporting their problems, especially if severe. Convergent validity with PedsQL and disease-specific measures showed that the two EQ-5D-Y versions performed about equally. Test–retest reliability (EQ-5D-Y-3L 0.78 vs EQ-5D-Y-5L 0.84), and sensitivity for detecting health changes, were both better in EQ-5D-Y-5L. Conclusions Extending the number of levels did not give clear superiority to EQ-5D-Y-5L over EQ-5D-Y-3L based on the criteria assessed in this study. However, increasing the number of levels benefitted EQ-5D-Y performance in the measurement of moderate to severe problems and especially in longitudinal study designs. Supplementary Information The online version contains supplementary material available at 10.1186/s12955-021-01889-4.