Dataset Information

Health-related quality-of-life assessment in dementia: Evidence of cross-cultural validity in Latin America.

ABSTRACT: All health-related quality-of-life (HRQL) measures for dementia have been developed in high-income countries and none were validated for cross-cultural use. Yet, the global majority of people living with dementia reside in low- and middle-income countries. We therefore investigated the measurement invariance of a set of self- and informant-report HRQL measures developed in the United Kingdom when used in Latin America. Self-reported HRQL was obtained using (DEMQOL) at a memory assessment service in the United Kingdom (n = 868) and a population cohort study in Latin America (n = 417). Informant reports were collected using DEMQOL-Proxy at both sites (n = 909 and n = 495). Multiple-group confirmatory bifactor models for ordered categorical item responses were estimated to evaluate measurement invariance. Results support configural, metric, and scalar invariance for the concept of general HRQL in DEMQOL and DEMQOL-Proxy. The dominant impact of general HRQL on item responses was evident across U.K. English and Ibero American Spanish versions of DEMQOL (?h = 0.87-0.90) and DEMQOL-Proxy (?h = 0.88-0.89). Ratings of "positive emotion" did not show a major impact on general HRQL appraisal, particularly for Latin American respondents. Item information curves show that self- and informant-reports were highly informative about the presence rather than the absence of HRQL impairment. We found no major difference in conceptual meaning, sensitivity, and relevance of DEMQOL and DEMQOL-Proxy for older adults in the United Kingdom and Latin America. Further replication is needed for consensus over which HRQL measures are appropriate for making cross-national comparisons in global dementia research. (PsycINFO Database Record (c) 2019 APA, all rights reserved).

SUBMITTER: Chua KC

PROVIDER: S-EPMC6818683 | biostudies-literature | 2019 Oct

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Health-related quality-of-life assessment in dementia: Evidence of cross-cultural validity in Latin America.

Chua Kia-Chong KC Böhnke Jan R JR Prince Martin M Banerjee Sube S

Psychological assessment 20190708 10

All health-related quality-of-life (HRQL) measures for dementia have been developed in high-income countries and none were validated for cross-cultural use. Yet, the global majority of people living with dementia reside in low- and middle-income countries. We therefore investigated the measurement invariance of a set of self- and informant-report HRQL measures developed in the United Kingdom when used in Latin America. Self-reported HRQL was obtained using (DEMQOL) at a memory assessment service ...[more]

PMID: 31282701

Similar Datasets

Project description:BackgroundStudies have suggested that the prevalence of dementia is lower in developing than in developed regions. We investigated the prevalence and severity of dementia in sites in low-income and middle-income countries according to two definitions of dementia diagnosis.MethodsWe undertook one-phase cross-sectional surveys of all residents aged 65 years and older (n=14 960) in 11 sites in seven low-income and middle-income countries (China, India, Cuba, Dominican Republic, Venezuela, Mexico, and Peru). Dementia diagnosis was made according to the culturally and educationally sensitive 10/66 dementia diagnostic algorithm, which had been prevalidated in 25 Latin American, Asian, and African centres; and by computerised application of the dementia criterion from the Diagnostic and Statistical Manual of Mental Disorders (DSM IV). We also compared prevalence of DSM-IV dementia in each of the study sites with that from estimates in European studies.FindingsThe prevalence of DSM-IV dementia varied widely, from 0.3% (95% CI 0.1-0.5) in rural India to 6.3% (5.0-7.7) in Cuba. After standardisation for age and sex, DSM-IV prevalence in urban Latin American sites was four-fifths of that in Europe (standardised morbidity ratio 80 [95% CI 70-91]), but in China the prevalence was only half (56 [32-91] in rural China), and in India and rural Latin America a quarter or less of the European prevalence (18 [5-34] in rural India). 10/66 dementia prevalence was higher than that of DSM-IV dementia, and more consistent across sites, varying between 5.6% (95% CI 4.2-7.0) in rural China and 11.7% (10.3-13.1) in the Dominican Republic. The validity of the 847 of 1345 cases of 10/66 dementia not confirmed by DSM-IV was supported by high levels of associated disability (mean WHO Disability Assessment Schedule II score 33.7 [SD 28.6]).InterpretationAs compared with the 10/66 dementia algorithm, the DSM-IV dementia criterion might underestimate dementia prevalence, especially in regions with low awareness of this emerging public-health problem.

Project description:Objectives: The aim of this study was to evaluate the validity of brief cognitive screening (BCS) tools designed to diagnose mild cognitive impairment (MCI) or dementia in Spanish-speaking individuals over the age of 50 years from Latin America (LA). Methods: A systematic search of titles and abstracts in Medline, Biomed Central, Embase, Scopus, Scirus, PsycINFO, LILACS, and SciELO was conducted. Inclusion criteria were papers written in English or Spanish involving samples from Spanish-speaking Latin American individuals published until 2018. Standard procedures were applied for reviewing the literature. The data related to the study sample, methodology, and procedures applied, as well as the performance obtained with the corresponding BCS, were collected and systematized. Results: Thirteen of 211 articles met the inclusion criteria. The studies primarily involved memory clinic-based samples, with the exception of two studies from an adult day-care center, one from a primary care clinic, and one from a community-based sample. All the studies originated from five of the 20 countries of LA and all used standardized diagnostic criteria for the diagnosis of dementia and MCI; however, the diagnostic protocols applied differed. Most studies reported samples with an average of 10 years of education and only one reported a sample with an average of <5 years of education. No publication to date has included an illiterate population. Although the Montreal cognitive assessment (MoCA) is the most widely-used BCS tool in LA, it is significantly influenced by education level. Conclusions: Although evidence is still limited, the findings from studies on LA populations suggest that MoCA requires cultural adaptations and different cutoff points according to education level. Moreover, the diagnostic validity of the INECO frontal screening (IFS) test should be evaluated in populations with a low level of education. Given the heterogeneity that exists in the levels of education in LA, more studies involving illiterate and indigenous populations are required.

Project description:BackgroundResearch on the nature of a "good death" has mostly focused on dying with cancer and other life-limiting diseases, but less so on dementia. Conceptualizing common cross-cultural themes regarding a good end of life in dementia will enable developing international care models.MethodsWe combined published qualitative studies about end of life with dementia, focus group and individual interviews with the researchers, and video-conferencing and continuous email discussions. The interviews were audio-recorded and transcribed verbatim. The data were analyzed thematically, and the researchers developed common themes referring to their original studies.ResultsFourteen qualitative researchers representing 14 cross-cultural studies covering qualitative data of 121 people with dementia and 292 family caregivers. The researchers and data were from eight countries UK, The Netherlands, Japan, Portugal, Germany, Canada, Brazil, and Ireland. Three focus groups, five individual interviews, and video-conferencing were conducted and feedback on multiple iterations was gained by 190 emails between May 2019 and April 2020 until consensus was achieved. Nine cross-culturally common themes emerged from the discussions and shared interpretation of the data of persons with dementia and family caregivers. Three represent basic needs: "Pain and Symptoms Controlled," "Being Provided Basic Care," and "A Place like Home." Other themes were "Having Preferences Met," "Receiving Respect as a Person," "Care for Caregivers," "Identity Being Preserved," "Being Connected," and "Satisfaction with Life and Spiritual Well-being." "Care for Caregivers" showed the greatest difference in emphasis across cultures. Good relationships were essential in all themes.ConclusionsThe common cross-cultural themes comprise a framework underpinned by value placed on personhood and dignity, emphasizing that interdependency through relationships is essential to promote a good end of life with dementia. These themes and valuing the importance of relationships as central to connecting the themes could support care planning and further development of a dementia palliative care model.Trial registrationThe Graduate School and Faculty of Medicine Kyoto University (R1924-1).

Project description:BackgroundMeasuring the health-related quality of life (HRQoL) of adolescents, including those with cerebral palsy (CP) (the major cause of childhood physical disability worldwide) in Bangladesh is pertinent although there is a dearth of validated instruments for assessing this concept. For application in a case-control study comparing HRQoL between adolescents with CP and peers without disability in Bangladesh (a typical low- and middle-income country) we cross-culturally translated and psychometrically tested KIDSCREEN-27.MethodsKIDSCREEN-27 was translated to Bengali using forward and backwards translation protocol and interviewer administered to adolescents with CP and their age and sex matched peers without disability. Primary caregivers were included for proxy-report. Sociodeomgraphic characterists and clinical information were extracted from the Bangladesh Cerebral Palsy Register (BCPR) and adolescent mental health was assessed using the Bengali version Strenghts and Difficulties Questionnaire (SDQ). Feasibility, floor and ceiling effect, internal consistency, content and construct validity of KIDSCREEN-27 were tested.ResultsFeasibility, floor and ceiling effect and internal consistency of KIDSCREEN-27 was good for both self- and proxy-report questionnaires; nil missing scores except 'school environment' (11.0% to 74.7%) which correlated to rates of non-school attendance; floor and ceiling effect ≤10.4% except 'peers and social support' 23.4%; Cronbach's alpha 0.67 to 0.91. Instrument validity was strong; factor analysis reflected original instrument dimensions within one to three factors and difference in known groups was observed by CP and adolescent mental health (p < 0.05).ConclusionKIDSCREEN-27 successfully translated to Bengali and both the self and proxy-report questionnaires showed good psychometric properties indicating suitability for case-control assessment of HRQoL between adolescents with CP and peers without disability in Bangladesh.

Dataset Information

Health-related quality-of-life assessment in dementia: Evidence of cross-cultural validity in Latin America.

Publications

Health-related quality-of-life assessment in dementia: Evidence of cross-cultural validity in Latin America.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets