Feasibility, reliability and validity of the health-related quality of life instrument Child Health Utility 9D (CHU9D) among school-aged children and adolescents in Sweden.

BACKGROUND: This study was conducted in a general population of schoolchildren in Sweden, with the aim to assess the psychometric properties of a generic preference-based health related quality of life (HRQoL) instrument, the Swedish Child Health Utility 9D (CHU9D), among schoolchildren aged 7-15 years, and in subgroups aged 7-9, 10-12 and 13-15 years. METHODS: In total, 486 school aged children, aged 7-15 years, completed a questionnaire including the CHU9D, the Pediatric quality of life inventory 4.0 (PedsQL), KIDSCREEN-10, questions on general health, long-term illness, and sociodemographic characteristics. Psychometric testing was undertaken of feasibility, internal consistency reliability, test-retest reliability, construct validity, factorial validity, concurrent validity, convergent validity and divergent validity. RESULTS: The CHU9D evidenced very few missing values, minimal ceiling, and no floor effects. The instrument achieved satisfactory internal consistency (Cronbach's Alfa > 0.7) and strong test-retest reliability (r > 0.6). Confirmatory factor analyses supported the proposed one-factor structure of the CHU9D. For child algorithm, RMSEA = 0.05, CFI = 0.95, TLI = 0.94, and SRMR = 0.04. For adult algorithm RMSEA = 0.04, CFI = 0.96, TLI = 0.95, and SRMR = 0.04. The CHU9D utility value correlated moderately or strongly with KIDSCREEN-10 and PedsQL total scores (r > 0.5-0.7). The CHU9D discriminated as anticipated on health and on three of five sociodemographic characteristics (sex, age, and custody arrangement, but not socioeconomic status and ethnic origin). CONCLUSIONS: This study provides evidence that the Swedish CHU9D is a feasible, reliable and valid measure of preference-based HRQoL in children. The study furthermore suggests that the CHU9D is appropriate for use among children 7-15 years of age in the general population, as well as among subgroups aged 7- 9, 10-12 and 13-15 years.

Canadian French translation and linguistic validation of the child health utility 9D (CHU9D).

BACKGROUND: Several preference based measures are validated for adults in cost utility analysis, but less are available for children and many researchers have criticized the quality of pediatric economic studies. The objective of this study was to perform a Canadian French translation and linguistic validation of the Child Health Utility 9D (CHU9D) that was conceptually equivalent to the original English version for use in Canada. METHODS: The translation and linguistic validation were realized by ICON Clinical Research (UK) Limited in association with the developer of the CHU9D and Canadian collaborators. This was done in accordance with industry standards and the guidance of the Food and Drug Administration (FDA) for patient-reported outcome (PRO) instruments. Five steps were considered: concept elaboration; forward translation; back translation; linguistic validation; proofreading and final verification. RESULTS: The CHU9D Canadian French translation and linguistic validation were realized without any major difficulties. Only 3 changes were made after the forward translation and 5 after the back translation. The result of back translation was very similar to the original English version. Six additional changes suggested by the developer team were accepted and the linguistic validation with five children led to 2 additional changes. Most changes were generally to change one word to better sounding Canadian French. CONCLUSION: We produced a Canadian French translation and cross-cultural adaptation of the Child Health Utility 9D (CHU9D). Before being used in clinical settings and research projects, the final Canadian French translation needs to be validated for metrological qualities of reliability and validity.

How Well Do the Generic Multi-attribute Utility Instruments Incorporate Patient and Public Views Into Their Descriptive Systems?

Multi-attribute utility instruments (MAUIs) are increasingly being used to generate utility data, which can be used to calculate quality-adjusted life-years (QALYs). These QALY data can then be incorporated into a cost-utility analysis as part of an economic evaluation, to inform health care resource allocation decisions. Many health care decision-making bodies around the world, such as the National Institute for Health and Care Excellence, require the use of generic MAUIs. Recently, there has been a call for greater input of patients into the development of patient-reported outcome measures, and this is now actively encouraged. By incorporating the views of patients, greater validity of an instrument is expected and it is more likely that patients will be able to self-complete the instrument, which is the ideal when obtaining information about a patient's health-related quality of life. This paper examines the stages of MAUI development and the scope for patient and/or public involvement at each stage. The paper then reviews how much the main generic MAUIs have incorporated the views of patients/the public into the development of their descriptive systems at each of these stages, and the implications of this. The review finds that the majority of MAUIs had very little input from patients/the public. Instead, existing literature and/or the views of experts were used. If we wish to incorporate patient/public views into future development of MAUIs, qualitative methods are recommended.

The potential of the Child Health Utility 9D Index as an outcome measure for child dental health.

BACKGROUND: The Child Health Utility 9D (CHU9D) is a relatively new generic child health-related quality of life measure (HRQoL)-designed to be completed by children-which enables the calculation of utility values.The aim is to investigate the use of the CHU9D Index as an outcome measure for child dental health in New Zealand. METHOD: A survey was conducted of children aged between 6 and 9 years attending for routine dental examinations in community clinics in Dunedin (New Zealand) in 2012. The CHU9D, a HRQoL, was used, along with the Child Perceptions Questionnaire (CPQ), a validated oral health-related quality of life (OHRQoL) measure. Socio-demographic characteristics (sex, age, ethnicity and household deprivation) were recorded. Dental therapists undertook routine clinical examinations, with charting recorded for each child for decayed, missing and filled deciduous teeth (dmft) at the d3 level. RESULTS: One hundred and forty 6-to-9-year-olds (50.7% female) took part in the study (93.3% participation rate). The mean d3mft was 2.4 (SD = 2.6; range 0 to 9). Both CHU9D and CPQ detected differences in the impact of dental caries, with scores in the expected direction: children who presented with caries had higher scores (indicating poorer OHRQoL) than those who were free of apparent caries. Children with no apparent caries had a higher mean CHU9D score than those with caries (indicating better HRQoL). The difference for the CPQ was statistically significant, but for CHU9D the difference was not significant. When the two indices were compared, there was a significant difference in mean CHU9D scores by the prevalence of CPQ and subscale impacts with children experiencing no impacts having mean CHU9D scores closer to 1.0 (representing perfect health). CONCLUSION: The CHU9D may be useful in dental research. Further exploration in samples with different caries experience is required. The use of the CHU9D in child oral health studies will enable the calculation of quality-adjusted life years (QALYs) for use in economic evaluation.

An assessment of the psychometric performance of the Health Utilities Index 2 and 3 in children following discharge from a U.K. pediatric intensive care unit.

OBJECTIVE: Our objective was to assess the psychometric performance of the Health Utilities Index 2 and 3 in a pediatric population following admission to a pediatric intensive care unit. DESIGN: As part of a larger study of pediatric intensive care outcomes, children were followed up at 6 and 12 months post admission from pediatric intensive care using the Health Utilities Index 2 and 3. We evaluated and compared the psychometric performance of the Health Utilities Index 2 and 3 in this population by assessing their practicality, reliability, and limited information regarding validity. SETTING: Twenty-two pediatric intensive care units in the United Kingdom. PATIENTS: A total of 685 children aged 5 yrs and over. INTERVENTIONS: The Health Utilities Index 2 and 3, which are both generic preference-based measures of health-related quality of life, were completed by proxy and children over 11 yrs of age were invited to self-complete. MEASUREMENT AND MAIN RESULTS: Both Health Utilities Index 2 and 3 demonstrated good practicality, with excellent completion rates (>97%) and a mean time to complete of around 8 mins. Both Health Utilities Index 2 and 3 demonstrated very good inter-rater reliability and evidence of sensitivity to change. At 6 months after admission, mean scores of the Health Utilities Index 2 and 3 were different in some groups of children with different degrees of in-hospital severity of illness, but those differences were not found at 12 months of follow-up. CONCLUSIONS: The Health Utilities Index 2 and 3 both perform well in a pediatric intensive care setting whether by self-complete or proxy complete. Evidence of good inter-rater reliability gives confidence that the measures can be reliably used with a proxy completer, such as parent or caregiver. Additional research is important to investigate their construct validity further in this population, ideally using baseline data collected at the time of hospital stay in pediatric intensive care and other measures of health status at the times of follow-up.

Working with children to develop dimensions for a preference-based, generic, pediatric, health-related quality-of-life measure.

Use of preference-based measures (PBM) of health-related quality of life (HRQoL) is increasing. PBMs allow the calculation of quality-adjusted life years, which can be used in decision making. Research in the field of pediatric PBMs is lacking. This work is the first stage in the development of a new generic, pediatric PBM of HRQoL. Seventy-four qualitative interviews were undertaken with children to find out how health affects their lives. Sampling was purposive, balancing primarily for health within age, with gender and ethnicity as secondary criteria. Interviews covered a wide range of health conditions, and children were successfully able to articulate how their health affected their lives. Eleven dimensions of HRQoL were identified, covering social, emotional, and physical aspects, in common with other generic pediatric HRQoL measures, but differ by including feeling jeal'ous and feeling tired/weak and not including dimensions related to parental, family, or behavioral issues.

Mapping between Visual Analogue Scale and Standard Gamble data; results from the UK Health Utilities Index 2 valuation survey.

We examine the relationship between Visual Analogue Scale (VAS) and Standard Gamble (SG) assumed in the development of the multiplicative multi-attribute utility functions (M-MAUFs) for the Health Utilities Index (HUI) Mark 2 and Mark 3, using data from a UK valuation study of the HUI2. A range of functional forms are considered, and are compared on the basis of their explanatory power and predictive ability.A restricted cubic function fits the data better than a power curve with a mean absolute error (MAE) of 0.025 and root mean square error (RMSE) of 0.029 compared to a MAE of 0.135 and RMSE of 0.135 for the power curve. The use of a cubic mapping function instead of a power function leads to different predicted health state values. We question the reliance on the assumption of a power curve relationship between VAS and SG data, in the Health Utilities Index valuation framework. Our results demonstrate that further work is required to examine the appropriateness of the published M-MAUFs for the Health Utilities Indices.

Utility scores for the Health Utilities Index Mark 2: an empirical assessment of alternative mapping functions.

INTRODUCTION: The Health Utilities Index is one of the most widely used generic health status classification systems. The valuation algorithm rests upon a power transformation between visual analog scale (VAS) and standard gamble (SG) data. This transformation has been the subject of much debate. To date, the literature has concentrated upon the mapping functions themselves. We examine whether alternative mapping functions produce more accurate utility predictions. METHODS: We undertook valuation interviews with 201 members of the UK general population, following the methods of the original Health Utilities Index-2 valuation survey. We estimated a cubic and a power mapping function using the mean VAS and SG data from the survey and calculated 2 alternative Multiplicative Multi Attribute Utility Functions (MAUFs). Using a validation sample, we assessed the predictive precision of the models in terms of accuracy (root mean square error and mean absolute error); clinical importance of the prediction error (% states with prediction error greater than 0.03); bias (t test); and whether the prediction error was related to the health state severity (Ljung Box Q statistic). RESULTS: The power MAUF was an extremely poor predictive model, mean absolute error = 0.18, root mean square error = 0.206. The predictions were biased (t = -12.92). The errors were not related to the severity of the health state, (Liung Box = 10.87). The Cubic MAUF was a better predictive model than the Power MAUF (mean absolute error = 0.084, root mean square error = 0.101). The Cubic MAUF also produced biased predictions (t = -3.57). The prediction errors were not related to the severity of the health state (Liung Box = 5.242). DISCUSSION: The Power MAUF is considerably worse than the Cubic MAUF. Our results suggest that the problems with the power function can translate into significant problems with predictive performance of the MAUF.