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Proxy reporting of health-related quality of life for people with dementia: a psychometric solution.

ABSTRACT: BACKGROUND:The growing move towards personalised health and social care systems means that every effort needs to be made to generate patient-reported outcome data. However, the deteriorating nature of dementia can make it difficult for people with dementia to complete self-reported questionnaires and it is often necessary to rely on a family member (proxy) to report on their behalf. There is little evidence to guide how the difference between self- and proxy-reports of health reported quality of life (HRQL) in dementia can be interpreted. METHODS:We recruited people with dementia and their family carers from 78 memory Assessment Services in the UK. We used Rasch measurement methods to investigate whether a HRQL questionnaire known as DEMQOL (self-reported by the person with dementia) and DEMQOL-Proxy (proxy-reported by a family carer) can be placed on the same continuum and whether a revised scoring algorithm, based on this equated model, can be developed that takes account of the relationship between self- and proxy-reports. RESULTS:In a sample of 1434 patients and 1030 carers, our findings supported equating DEMQOL/DEMQOL-Proxy (overall fit to the model; no mis-fitting items) after addressing specific issues (eight disordered items requiring re-scoring, four pairs locally dependent items, and five items showing DIF). Cross walk tables have been produced. CONCLUSIONS:We have established for the first time that DEMQOL and DEMQOL-Proxy can be placed on the same continuum and that patients and carer proxies are reporting on the same construct when they complete these questionnaires. Where possible both DEMQOL and DEMQOL-Proxy should still be administered together, using the improved scoring algorithm reported here. Where only DEMQOL-Proxy is available, the cross walk tables provide an estimate of DEMQOL for a particular person from their DEMQOL-Proxy score.

SUBMITTER: Smith SC

PROVIDER: S-EPMC7245851 | biostudies-literature | 2020 May

REPOSITORIES: biostudies-literature

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Proxy reporting of health-related quality of life for people with dementia: a psychometric solution.

Smith S C SC Hendriks A A J AAJ Cano S J SJ Black N N

Health and quality of life outcomes 20200524 1

<h4>Background</h4>The growing move towards personalised health and social care systems means that every effort needs to be made to generate patient-reported outcome data. However, the deteriorating nature of dementia can make it difficult for people with dementia to complete self-reported questionnaires and it is often necessary to rely on a family member (proxy) to report on their behalf. There is little evidence to guide how the difference between self- and proxy-reports of health reported qu ...[more]

PMID: 32448322

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Project description: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.

Project description:BackgroundThe Pediatric Quality of Life Inventory Version 4.0 (PedsQLTM4.0) is a generic health-related quality of life (HRQoL) questionnaire, widely used in pediatric clinical trials but not yet validated in France. We performed the psychometric validation of the self and proxy PedsQLTM4.0 generic questionnaires for French children aged 8-12 years old.MethodsThis bicentric cross-sectional study included 123 children and their parents with congenital heart disease (CHD) and 97 controls. The psychometric validation method was based on the consensus-based standards for the selection of health measurement instruments (COSMIN). The reliability was tested using the intraclass correlation coefficient (ICC). To evaluate the validity of this scale, content, face, criterion, and construct validity psychometric proprieties were tested. Acceptability was studied regarding questionnaires' completion and the existence of a floor or a ceiling effect.ResultsTest-retest reliability intra-class correlation coefficients were mainly in good range (0.49-0.66). Face validity was very good among parents (0.85) and children (0.75). Content validity was good (0.70), despite misinterpretation of some items. In construct validity, each subscale had acceptable internal consistency reliability (Cronbach's ??>?0.72 in self-reports,?>?0.69 in proxy-reports). In the confirmatory factor analysis, the goodness-of-fit statistics rejected the original structure with 4 factors. The exploratory factor analysis revealed an alternative two-factor structure corresponding to physical and psychological dimensions. Convergent validity was supported by moderate (>?0.41) to high correlations (0.57) between PedsQL and Kidscreeen questionnaires for physical, emotion and school dimensions. The ability of the PedsQL to discriminate CHD severity was better with physical, social and total scores for both self-reports and proxy-reports.ConclusionsThe PedsQLTM4.0 generic self and proxy HRQoL questionnaires found good psychometric properties, with regard to acceptability, responsiveness, validity, and reliability. This instrument appeared to be easy to use and comprehend within the target population of children aged 8 to 12 years old and their parents.Trial registrationThis study was approved by the South-Mediterranean-IV Ethics Committee and registered on ClinicalTrials.gov (NCT01202916), https://clinicaltrials.gov/ct2/show/NCT01202916 .

Project description:BackgroundThe concept of health-related quality of life and education integrates the bio-psychosocial perspective of health and the multidimensional potentialities of education for wellbeing. This present work is especially relevant to young people because understanding the interaction between health and education can facilitate the design of preventive policies. The research examines the way in which the educational level of young people from an urban district in the city of Zaragoza (Casablanca) has an influence on their health-related quality of life (HRQOL).MethodsA cross sectional survey was undertaken in the Casablanca district of Zaragoza (Spain). Participants were not randomly selected; their numbers reflected the areas where they lived with respect to age and sex distribution. It comprised 122 boys and 122 girls, aged between16 and 29, living in the neighbourhood are: Viñedo Viejo, Las Nieves and Fuentes Claras. These three residence zones are markedly different in terms of socioeconomic composition. The questionnaire included the following information: socioeconomic characteristics (sex, age, educational level, employment status, residence zone), an assessment of health (health problems, diagnosis and medication in the last 2?weeks) and HRQOL (WHOQOL-BREF dimensions: mental health; physical health; social relations; and environment). ANOVA and four regression models were used to assess the role, direction and intensity of educational level on HRQOL.ResultsThe results show that the higher the level of education, the better the level of HRQOL. The biggest impact of education was on the mental health dimension, but this influence was modulated by sex and residence zone. The value of the interaction of education and residence zone was more significant than educational level alone. HRQOL of girls is more sensitive to education, being a student and residence zone than the HRQOL of boys.ConclusionsThe dimensions of HRQOL are influenced by educational level. The influence is greatest among girls and the youngest members of the poorest area of the district. Public authorities should contemplate the development of an equitable education system from the beginning of the life cycle as a public health strategy.

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Proxy reporting of health-related quality of life for people with dementia: a psychometric solution.

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Proxy reporting of health-related quality of life for people with dementia: a psychometric solution.

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