Predicting Time Trade-Off Health State Valuations of Adolescents in Four Pacific Countries Using the Assessment of Quality-of-Life (AQoL-6D) Instrument

Moodie, Marj; Richardson, Jeffrey Ralph James; Rankin, Bree; Iezzi, Angelo; Sinha, Kompal

doi:10.1111/j.1524-4733.2010.00780.x

Cited by 85 publications

(106 citation statements)

References 17 publications

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“…Two PBMs were not included for further analyses, as no evidence was found in an English-speaking population: 16 Dimensional (16D) 198 /17 Dimensional (17D), 199 and Assessment of Quality of Life Mark 2 -6D Adolescents (AQoL-6D). 200 Characteristics of these excluded PROMs can be found in Appendix 7.…”

Section: Preference-based Measuresmentioning

confidence: 99%

Informing the NHS Outcomes Framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting

Morris

Janssens

Allard

et al. 2014

Health Services and Delivery Research

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BackgroundThe identification of suitable outcome measures will improve the evaluation of integrated NHS care for the large number of children affected by neurodisability, and has the potential to encourage the provision of more appropriate and effective health care. This research sought to appraise the potential of patient-reported outcome measures (PROMs) for children and young people with neurodisability.AimThis research aimed (i) to identify key outcomes of health care for children with neurodisability, beyond morbidity and mortality, from the perspectives of children, parents and professionals; (ii) to critically appraise existing generic multidimensional PROMs; and (iii) to examine whether or not the key outcomes might be measured by existing PROMs. We also sought agreement on a definition of neurodisability.MethodsData were gathered in three main ways, (i) a systematic review identified eligible generic multidimensional PROMs and peer-reviewed studies evaluating psychometric performance using English-language questionnaires. Studies were appraised for methodological quality and psychometric performance was appraised using standard criteria. (ii) Focus groups and interviews with children and young people with neurodisability, and separately with parents, sought to identify important outcomes of NHS care, and their feedback on example PROM questionnaires. (iii) An online Delphi survey was conducted with a multidisciplinary sample of health professionals to seek agreement on appropriate NHS outcomes. In addition, we convened a consensus meeting with a small nominal group of young people, parents and professionals; the group sought agreement on a core set of important health outcomes.ResultsFrom the systematic review, we identified 126 papers that reported eligible evidence regarding the psychometric performance of 25 PROMs. Evidence of psychometric robustness was more favourable for a small number of PROMs: KIDSCREEN (generic), DISABKIDS (chronic-generic) and Child Health Utility 9D (preference-based measure). The Pediatric Quality of Life Inventory and KINDL offer both self-report and a proxy report version for a range of age bands, but evidence of their psychometric performance was weaker. Evidence was lacking in one or more respects for all candidate PROMs, in both general populations and those with neurodisability. Proxy reporting was found generally to be poorly correlated with self-report. Focus groups and interviews included 54 children and young people, and 53 parents. The more important health outcomes were felt to be communication, emotional well-being, pain, mobility, independence/self-care, worry/mental health, social activities and sleep. In addition, parents of children with intellectual impairment identified behaviour, toileting and safety as important outcomes. Participants suggested problems with the face validity of example PROM questionnaires for measuring NHS care. In the Delphi survey, 276 clinicians from a wide range of professions contributed to at least one of four rounds. Professionals rated pain, hearing, seeing, sleep, toileting, mobility and communication as key goals for the NHS but also identified treating neurological symptoms as important. Professionals in the Delphi survey and parents working with the research team agreed a proposed definition for neurodisability. The consensus meeting confirmed overlap between the outcomes identified as important by young people, parents and professionals, but not complete agreement.ConclusionsThere was agreement between young people, parents and professionals regarding a core suite of more important health outcomes: communication, emotional well-being, pain, mobility, independence/self-care, worry/mental health, social activities and sleep. In addition, behaviour, toileting and safety were identified as important by parents. This research suggests that it would be appropriate to measure these constructs using PROMs to assess health care. None of the candidate PROMs in the review adequately captures all of the identified constructs, and there is inadequate evidence that candidate PROMs are psychometrically robust for use across children with neurodisability. Further consultation with young people, families and professionals is warranted to support the use of PROMs to measure NHS outcomes. Research to test potential PROMs with different age groups and conditions would be valuable.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Section: Preference-based Measuresmentioning

confidence: 99%

Informing the NHS Outcomes Framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting

Morris

Janssens

Allard

et al. 2014

Health Services and Delivery Research

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show abstract

“…18 In contrast to other generic preference-based measures of HRQoL recently developed for application with child and adolescent populations, including the EQ-5D-Y 26,27 and the Assessment of Quality of Life 6D (AQoL-6D), 28 which represent adaptations of existing instruments originally developed for adults, the CHU9D was developed from its inception with young people. 29 The CHU9D has 9 dimensions: worried, sad, pain, tired, annoyed, schoolwork, sleep, daily routine, and ability to join in activities, with 5 responses representing increasing levels of severity within each dimension.…”

Section: Hrqol Measurementmentioning

confidence: 99%

BMI, Health Behaviors, and Quality of Life in Children and Adolescents: A School-Based Study

Chen¹,

Ratcliffe²,

Olds

et al. 2014

Pediatrics

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WHAT'S KNOWN ON THIS SUBJECT: Existing literature indicates relationships between BMI, physical activity, sleep patterns, eating behavior, and health-related quality of life in children and adolescents. However, many previous studies have used nonpreference-based instruments, which are not suitable for application within economic evaluation. WHAT THIS STUDY ADDS:The Child Health Utility 9D, a new preference-based health-related quality of life instrument for application in economic evaluation in children and adolescents, revealed stronger associations between utilities and sleep patterns or eating behavior than with BMI, physical activity, or sedentary behavior. abstract OBJECTIVE: To explore the relationship between weight status (BMI) and health-related quality of life in children and adolescents through application of the Child Health Utility 9D, a new generic preference-based instrument.METHODS: Data were collected from primary and high school students in rural and metropolitan regions of South Australia. Consenting participants (2588 in grades 4-6 and 765 in grades 9-10) were weighed and measured and categorized as underweight, healthy weight, overweight, or obese according to International Obesity Taskforce BMI cutoff points (primary outcome). Participants also completed a questionnaire including the Child Health Utility 9D and standardized measures of physical activity, sedentary behavior, sleep patterns, and eating behavior (secondary outcomes). Descriptive and multivariate linear regression analyses were undertaken to calculate mean utility differences. RESULTS:In comparison with healthy-weight primary school students, adjusted mean utilities were lower for overweight (20.016, P = .02) or obese (20.039, P = .001) students. For high school students, the adjusted mean utilities were also lower for overweight and obese students but were nonsignificant (20.018, P . .10). Physical activity, sedentary behavior, sleep patterns, and eating behavior were all found to be significantly associated with utilities. CONCLUSIONS:Irrespective of BMI, young people engaging in more physical activities or less sedentary behavior, and having healthier sleep patterns or eating behavior exhibited higher utilities. Associations between utilities and sleep patterns or eating behavior were stronger than the associations with BMI. Future economic evaluations for obesity interventions should more formally investigate the relationship between changes over time in weight status and health-related quality of life for children and adolescents. Pediatrics 2014;133:e868-e874 Childhood overweight and obesity is a key public health issue, with prevalence in Australian children between 20% and 25%, 1-3 and in the United States, it is 35%. 4 Childhood obesity is associated with a range of medical complications and psychological conditions, such as diabetes, cardiovascular disease, gallbladder disease, obstructive sleep apnea, social stigmatization, and low self-esteem. 5,6 Health-related quality of life (HRQoL) is a multidimensional constru...

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“…All these six measures are included in the review. The EQ-5D and AQoL both have versions for children/adolescents (EQ-5D Youth (EQ-5D-Y) [2] and AQoL 6D respectively [17]). In addition, the Child Health Utility 9D (CHU9D) has recently been developed as a new paediatric MAUI [18].…”

Section: Testing Of the Descriptive Systemmentioning

confidence: 99%

“…It was designed to increase sensitivity to health state variations close to normal health and to extend the coverage of AQoL. A subsequent study refined it for application in adolescents by interviewing adolescents and testing the semantics and language [17]. It has six dimensions, (independent living, social relationships, physical senses, psychological wellbeing, pain and coping) [17].…”

Section: Aqol-6dmentioning

confidence: 99%

“…A subsequent study refined it for application in adolescents by interviewing adolescents and testing the semantics and language [17]. It has six dimensions, (independent living, social relationships, physical senses, psychological wellbeing, pain and coping) [17]. Patients/the public were not involved in the first or second stages, as this was derived from an existing measure.…”

Section: Aqol-6dmentioning

confidence: 99%

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

Stevens

2015

Patient

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Short running title: Incorporating patient and public views in multi attribute utility instrumentsAbstract 2 Multi attribute utility instruments (MAUI) are being increasingly used to generate utility data which can be used to calculate quality adjusted life years (QALYs). This 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 in 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 an 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 was used. If we wish to incorporate patient/public views in future development of MAUIs, then qualitative methods are recommended. Key Points for Decision Makers The majority of multi attribute utility instruments had very little involvement of patients in the development of their descriptive systems  The descriptive systems of multi attribute utility instruments were mostly developed using top down methods, which made use of existing literature and/or views of experts in determining what should be included  If patient or public views are to be incorporated in the development of descriptive systems in the future, qualitative methods are recommended.3

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Predicting Time Trade-Off Health State Valuations of Adolescents in Four Pacific Countries Using the Assessment of Quality-of-Life (AQoL-6D) Instrument

Abstract: Statistical results indicate that the AQoL-6D can be validly used in the economic evaluation of both the OPIC interventions and other adolescent programs.

Cited by 85 publications

References 17 publications

Informing the NHS Outcomes Framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting

Informing the NHS Outcomes Framework: evaluating meaningful health outcomes for children with neurodisability using multiple methods including systematic review, qualitative research, Delphi survey and consensus meeting

BMI, Health Behaviors, and Quality of Life in Children and Adolescents: A School-Based Study

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

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