Dataset Information

Measuring health-related quality of life in the general population and Roma communities in Romania: study protocol for two cross-sectional studies.

ABSTRACT: INTRODUCTION:The importance of health-related quality of life (HRQoL) is increasing and many healthcare authorities recommend the use of measures that account for both mortality and morbidity. This study will determine, for the first time in Romania, value sets for EuroQoL-five-dimensions-3-level (EQ-5D-3L) and EQ-5D-5L questionnaires and their population norms (study 1). It will also compare the HRQoL (measured with EQ-5D-5L) of Roma communities in Romania with that of the general population (study 2). METHODS AND ANALYSIS:Cross-sectional studies of face-to-face interviews conducted in representative samples of the Romanian general population and Romanian Roma communities. 1614 non-institutionalised adults older than 18 years will be interviewed using a computer-assisted interview for study 1. Participants will complete EQ-5D-3L and 5L, 13 composite time trade-off tasks (cTTO), 7 discrete choice experiment questions (DCE) and sociodemographic questions. For study 2, 606 non-institutionalised self-identified Roma people older than 18 years will be interviewed using a pencil-and-paper interview. Participants will complete EQ-5D-5L and the same sociodemographic questions as for study 1. The 3L value set will be estimated using econometric models and the cTTO data. cTTO and DCE data will be used for the 5L value set. Population norms will be reported by age and gender. The ORs for reporting different levels of problems and the most common health states in the population will be estimated. For study 2, t-tests and analysis of variance will be used to explore differences between groups in HRQoL and for each EQ-5D. ETHICS AND DISSEMINATION:Ethics approval was given by the National Bioethics Committee of Medicines and Medical Devices Romania and Newcastle University's Research Ethics Committee. Results will be published in peer-reviewed journals, presented at scientific conferences and on the project's website. The EQ-5D-5L anonymised datasets will be deposited in a centralised repository. Two public workshops with local authorities, physicians and patients' associations will be held.

SUBMITTER: Olariu E

PROVIDER: S-EPMC6701682 | biostudies-literature | 2019 Aug

REPOSITORIES: biostudies-literature

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Measuring health-related quality of life in the general population and Roma communities in Romania: study protocol for two cross-sectional studies.

Olariu Elena E Paveliu Marian Sorin MS Baican Eugen E Oluboyede Yemi Y Vale Luke L Niculescu-Aron Ileana Gabriela IG

BMJ open 20190818 8

<h4>Introduction</h4>The importance of health-related quality of life (HRQoL) is increasing and many healthcare authorities recommend the use of measures that account for both mortality and morbidity. This study will determine, for the first time in Romania, value sets for EuroQoL-five-dimensions-3-level (EQ-5D-3L) and EQ-5D-5L questionnaires and their population norms (study 1). It will also compare the HRQoL (measured with EQ-5D-5L) of Roma communities in Romania with that of the general popul ...[more]

PMID: 31427330

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Project description:Background: This study explores how the Roma in Romania, the EU's most concentrated population, are faring in terms of a number of quality of life indicators, including poverty levels, healthcare, education, water, sanitation, and hygiene. It further explores the role of synthetic populations and modelling in identifying at-risk populations and delivering targeted aid. Methods: 135 surveys were conducted across five geographically diverse Romanian communities. Household participants were selected through a comprehensive random walk method. Analyses were conducted on all data using Pandas for Python. Combining land scan data, time-use survey analyses, interview data, and ArcGIS, the resulting synthetic population was analysed via classification and regression tree (CART) analysis to identify hot-spots of need, both ethnically and geographically. Results: These data indicate that the Roma in Romania face significant disparities in education, with Roma students less likely to progress beyond 8 th grade. In addition, the Roma population remains significantly disadvantaged with regard to safe and secure housing, poverty, and healthcare status, particularly in connection to diarrheal disease. In contrast, however, both Roma and non-Roma in rural areas face difficulties regarding full-time employment, sanitation, and water, sanitation, and hygiene infrastructure. In addition, the use of a synthetic population can generate information about 'hot spots' of need, based on geography, ethnicity, and type of aid required. Conclusions: These data demonstrate the challenges that remain to the Roma population in Romania, and also point to the myriad of ways in which all rural Romanians, regardless of ethnicity, are encountering hardship. This study highlights an approach that combines traditional survey data with more wide-reaching geographically based data and CART analysis to determine 'hot spot' areas of need in a given population. With the appropriate inputs, this tool can be extrapolated to any population in any country.

Project description:BACKGROUND:Domains other than those commonly measured (physical, psychological, social, and sometimes existential/spiritual) are important to the quality of life of people with life-threatening illness. The McGill Quality of Life Questionnaire (MQOL) - Revised measures the four common domains. The aim of this study was to create a psychometrically sound instrument, MQOL - Expanded, to comprehensively measure quality of life by adding to MQOL-Revised the domains of cognition, healthcare, environment, (feeling like a) burden, and possibly, finance. METHODS:Confirmatory factor analyses were conducted on three datasets to ascertain whether seven new items belonged with existing MQOL-Revised domains, whether good model fit was obtained with their addition as five separate domains to MQOL-Revised, and whether a second-order factor representing overall quality of life was present. People with life-threatening illnesses (mainly cancer) or aged > 80 were recruited from 15 healthcare sites in seven Canadian provinces. Settings included: palliative home care and inpatient units; acute care units; oncology outpatient clinics. RESULTS:Good model fit was obtained when adding each of the five domains separately to MQOL-Revised and for the nine correlated domains. Fit was acceptable for a second-order factor model. The financial domain was removed because of low importance. The resulting MQOL-Expanded is a 21-item instrument with eight domains (fit of eight correlated domains: Comparative Fit Index = .96; Root Mean Square Error of Approximation = .033). CONCLUSIONS:MQOL-Expanded builds on MQOL-Revised to more comprehensively measure the quality of life of people with life-threatening illness. Our analyses provide validity evidence for the MQOL-Expanded domain and summary scores; the need for further validation research is discussed. Use of MQOL-Expanded will enable a more holistic understanding of the quality of life of people with a life-threatening illness and the impact of treatments and interventions upon it. It will allow for a better understanding of less commonly assessed but important life domains (cognition, healthcare, environment, feeling like a burden) and their relationship to the more commonly assessed domains (physical, psychological, social, existential/spiritual).

Project description:INTRODUCTION:Dementia is the fastest growing major cause of disability globally and may have a profound impact on the health-related quality of life (HRQoL) of both the patient with dementia and those who care for them. This review aims to systematically identify and synthesise the measurements of HRQoL for people with, and their caregivers across the full spectrum of, dementia from its preceding stage of predementia to end of life. METHODS AND ANALYSIS:A systematic literature review was conducted in Medical Literature Analysis and Retrieval System Online , ExcerptaMedicadataBASE, Cochrane Database of Systematic Reviews , Cochrane Central Register of Controlled Trials, Database of Abstracts of Reviews of Effect, National Health Service Economic Evaluation Database and PsycINFO between January 1990 and the end of April 2017. Two reviewers will independently assess each study for inclusion and disagreements will be resolved by a third reviewer. Data will be extracted using a predefined data extraction form following best practice. Study quality will be assessed with the Effective Public Health Practice Project quality assessment tool. HRQoL measurements will be presented separately for people with dementia and caregivers by instrument used and, when possible, HRQoL will be reported by disease type and stage of the disease. Descriptive statistics of the results will be provided. A narrative synthesis of studies will also be provided discussing differences in HRQoL measurements by instrument used to estimate it, type of dementia and disease severity. ETHICS AND DISSEMINATION:This systematic literature review is exempt from ethics approval because the work is carried out on published documents. The findings of the review will be disseminated in a related peer-reviewed journal and presented at conferences. They will also contribute to the work developed in the Real World Outcomes across the Alzheimer's disease spectrum for better care: multimodal data access platform (ROADMAP). TRIAL REGISTRATION NUMBER:CRD42017071416.

Project description:OBJECTIVE:In China, psychosocial problems of patients with cancer are under-recognised and undertreated in medical oncology practice. This study examined the health-related quality of life (QOL) in inpatients with lung cancer treated in large general hospitals and explored the demographic, clinical and psychosocial factors associated with QOL. DESIGN:Cross-sectional study. PARTICIPANTS AND SETTING:Altogether, 148 inpatients with lung cancer were consecutively recruited from two large general hospitals in Tianjin, China. MAIN OUTCOME MEASURED:QOL, pain intensity, depressive and anxiety symptoms, and social support were assessed with WHO QOL Scale Brief Version, four-point Verbal Rating Scale, Hospital Anxiety and Depression Scale and Social Support Rating Scale, respectively. RESULTS:Compared with the normative data for the Chinese general population, patients had significantly lower scores in physical (t=-25.860, p<0.001) and psychological (t=-18.225, p<0.001) QOL. Being unmarried (?=-2.471, 95%?CI -4.908 to -0.034), poor economic status (?=-1.764, 95%?CI -2.964 to -0.564), cancer metastasis (?=-1.328, 95%?CI -2.632 to -0.024), poor performance status (?=-0.959, 95%?CI -1.542 to -0.376), depression (?=-0.465, 95%?CI -0.631 to -0.299), anxiety (?=-0.208, 95%?CI -0.354 to -0.062) and low utilisation of social support (?=-0.344, 95%?CI -0.577 to -0.111) were independently associated with poor physical QOL, while female gender (?=-1.494, 95%?CI -0.649 to -2.339), less education years (?=-0.209, 95%?CI -0.294 to -0.123), currently receiving chemotherapy (?=-1.536, 95%?CI -3.051 to -0.021), small-cell cancer (?=-1.157, 95%?CI -2.223 to -0.091), more intense pain (?=-0.535, 95%?CI -0.919 to -0.151), poor performance status (?=-0.930, 95%?CI -1.383 to -0.477), anxiety (?=-0.178, 95%?CI -0.248 to -0.108) and inadequate subjective social support (?=-0.137, 95%?CI -0.153 to -0.121) were independently associated with poor psychological QOL. CONCLUSIONS:Inpatients with lung cancer treated in Chinese large general hospitals have poorer QOL than the general population. Effective prevention and management of psychosocial problems are potentially effective to improve their QOL.

Dataset Information

Measuring health-related quality of life in the general population and Roma communities in Romania: study protocol for two cross-sectional studies.

Publications

Measuring health-related quality of life in the general population and Roma communities in Romania: study protocol for two cross-sectional studies.

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