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Common measure of quality of life for people with systemic sclerosis across seven European countries: a cross-sectional study.

ABSTRACT: OBJECTIVES:The aim of this study was to adapt the Systemic Sclerosis Quality of Life Questionnaire (SScQoL) into six European cultures and validate it as a common measure of quality of life in systemic sclerosis (SSc). METHODS:This was a seven-country (Germany, France, Italy, Poland, Spain, Sweden and UK) cross-sectional study. A forward-backward translation process was used to adapt the English SScQoL into target languages. SScQoL was completed by patients with SSc, then data were validated against the Rasch model. To correct local response dependency, items were grouped into the following subscales: function, emotion, sleep, social and pain and reanalysed for fit to the model, unidimensionality and cross-cultural equivalence. RESULTS:The adaptation of the SScQoL was seamless in all countries except Germany. Cross-cultural validation included 1080 patients with a mean age 58.0 years (SD 13.9) and 87% were women. Local dependency was evident in individual country data. Grouping items into testlets corrected the local dependency in most country specific data. Fit to the model, reliability and unidimensionality was achieved in six-country data after cross-cultural adjustment for Italy in the social subscale. The SScQoL was then calibrated into an interval level scale. CONCLUSION:The individual SScQoL items have translated well into five languages and overall, the scale maintained its construct validity, working well as a five-subscale questionnaire. Measures of quality of life in SSc can be directly compared across five countries (France, Poland Spain, Sweden and UK). Data from Italy are also comparable with the other five countries although require an adjustment.

SUBMITTER: Ndosi M

PROVIDER: S-EPMC6029637 | biostudies-other | 2018 Jul

REPOSITORIES: biostudies-other

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Common measure of quality of life for people with systemic sclerosis across seven European countries: a cross-sectional study.

Ndosi Mwidimi M Alcacer-Pitarch Begonya B Allanore Yannick Y Del Galdo Francesco F Frerix Marc M García-Díaz Sílvia S Hesselstrand Roger R Kendall Christine C Matucci-Cerinic Marco M Mueller-Ladner Ulf U Sandqvist Gunnel G Torrente-Segarra Vicenç V Schmeiser Tim T Sierakowska Matylda M Sierakowska Justyna J Sierakowski Stanslaw S Redmond Anthony A

Annals of the rheumatic diseases 20180220 7

<h4>Objectives</h4>The aim of this study was to adapt the Systemic Sclerosis Quality of Life Questionnaire (SScQoL) into six European cultures and validate it as a common measure of quality of life in systemic sclerosis (SSc).<h4>Methods</h4>This was a seven-country (Germany, France, Italy, Poland, Spain, Sweden and UK) cross-sectional study. A forward-backward translation process was used to adapt the English SScQoL into target languages. SScQoL was completed by patients with SSc, then data wer ...[more]

PMID: 29463517

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Project description:AIM:Culture is becoming increasingly important in relation to end of life (EoL) care in a context of globalization, migration and European integration. We explore and compare socio-cultural issues that shape EoL care in seven European countries and critically appraise the existing research evidence on cultural issues in EoL care generated in the different countries. METHODS:We scoped the literature for Germany, Norway, Belgium, The Netherlands, Spain, Italy and Portugal, carrying out electronic searches in 16 international and country-specific databases and handsearches in 17 journals, bibliographies of relevant papers and webpages. We analysed the literature which was unearthed, in its entirety and by type (reviews, original studies, opinion pieces) and conducted quantitative analyses for each country and across countries. Qualitative techniques generated themes and sub-themes. RESULTS:A total of 868 papers were reviewed. The following themes facilitated cross-country comparison: setting, caregivers, communication, medical EoL decisions, minority ethnic groups, and knowledge, attitudes and values of death and care. The frequencies of themes varied considerably between countries. Sub-themes reflected issues characteristic for specific countries (e.g. culture-specific disclosure in the southern European countries). The work from the seven European countries concentrates on cultural traditions and identities, and there was almost no evidence on ethnic minorities. CONCLUSION:This scoping review is the first comparative exploration of the cultural differences in the understanding of EoL care in these countries. The diverse body of evidence that was identified on socio-cultural issues in EoL care, reflects clearly distinguishable national cultures of EoL care, with differences in meaning, priorities, and expertise in each country. The diverse ways that EoL care is understood and practised forms a necessary part of what constitutes best evidence for the improvement of EoL care in the future.

Project description:IntroductionSystemic sclerosis (SSc) is a connective tissue disease characterized by progressive fibrosis of the skin and internal organs, leading to their failure and disturbances in the morphology and function of blood vessels. The disease affects people in different ways, and identifying how the difficulties and limitations are related to quality of life may contribute to designing helpful interventions. The aim of this study was to identify factors associated with quality of life in people with SSc.MethodsThis was a cross-sectional study conducted in 11 rheumatic centres in Poland. Patients diagnosed with SSc were included. Quality of life was measured using the SSc Quality of Life Questionnaire (SScQoL). The following candidate factors were entered in preliminary multivariable analysis: age, place of residence, marital status, occupational status, disease type, disease duration, pain, fatigue, intestinal problems, breathing problems, Raynaud's symptoms, finger ulcerations, disease severity, functional disability, anxiety and depression. Factors that achieved statistical significance at the 10% level were then entered into a final multivariable model. Factors achieving statistical significance at the 5% level in the final model were considered to be associated with quality of life in SSc.ResultsIn total, 231 participants were included. Mean age (SD) was 55.82 (12.55) years, disease duration 8.39 (8.18) years and 198 (85.7%) were women. Factors associated with quality of life in SSc were functional disability (β = 2.854, p < 0.001) and anxiety (β = 0.404, p < 0.001). This model with two factors (functional disability and anxiety) explained 56.7% of the variance in patients with diffuse SSc and 73.2% in those with localized SSc.ConclusionsFunctional disability and anxiety are significantly associated with quality of life in SSc. Interventions aimed at improving either of these factors may contribute towards improving the quality of life of people with SSc.

Project description:PurposeTo investigate health-related quality of life (HRQoL) over the course of the COVID-19 pandemic in seven European countries and its association with selected sociodemographic as well as COVID-19-related variables.MethodsWe used longitudinal data from nine quarterly waves collected between April 2020 and January 2022 (sample size per wave ranging from N = 7025 to 7300) of the European COvid Survey (ECOS), a representative survey of adults in Germany, United Kingdom, Denmark, Netherlands, France, Portugal and Italy. HRQoL was measured using the EQ-5D-5L. The association of self-reported COVID-19 infection, perceived health risk from COVID-19, selected sociodemographic variables and the COVID-19 stringency index with HRQoL was analyzed by logistic and linear fixed effects regressions.ResultsOn average across all nine waves, the proportion of respondents reporting any problems in at least one of the EQ-5D dimensions ranged between 63.8% (Netherlands) and 71.0% (Denmark). Anxiety/depression was the most frequently affected EQ-5D dimension in four countries (Portugal: 52.0%; United Kingdom: 50.2%; Italy: 49.2%; France: 49.0%), whereas pain/discomfort ranked first in three countries (Denmark: 58.3%; Germany: 55.8%; Netherlands: 49.0%). On average across all nine waves, the EQ-VAS score ranged from 70.1 in the United Kingdom to 78.4 in Portugal. Moreover, the EQ-5D-5L index ranged from .82 in Denmark to .94 in France. The occurrence of COVID-19 infection, changes in the perceived risk to one's own health from COVID-19, the occurrence of income difficulties and an increase in the COVID-19 stringency index were associated with increased likelihood of problems in EQ-5D dimensions, reduced EQ-VAS score and reduced EQ-5D-5L index.ConclusionsAcross seven European countries, we found large proportions of respondents reporting problems in HRQoL dimensions throughout the pandemic, especially for anxiety/depression. Various sociodemographic and COVID-19-related variables were associated with HRQoL in longitudinal analysis.

Project description:BackgroundCountries vary in the number of qualified nurses employed in older adult services. Moreover, students' views of older people nursing as a career differ internationally. Studying future nurses and their career intentions for the field is warranted to meet the increased nurse workforce expectations in terms of quantity and competence.AimTo analyse graduating nurse students' interest in older people nursing and the factors associated with it.MethodsA cross-sectional multicountry survey design was applied. Data were collected between May 2018 and March 2019 from several educational institutions in Finland, Germany, Iceland, Ireland, Lithuania and Spain. Non-probability convenience sampling was used to recruit graduating nurse students (n = 1796). The data were collected with a structured questionnaire comprising background factors and the Willingness sub-scale (six items) of the Students' Interest in Nursing Older People Scale. Data were analysed using a linear mixed model including relevant background variables.ResultsOverall, students' interest in older people nursing was low (score 20.5, on a 0-100 scale). Among the studied countries, Spanish students scored the highest (38.8) and German students the lowest (3.6). Students' interest in older people nursing was associated with country (p < .001), the length of work experience (p = .006), plans for further study (p = .007), competence (p < .001) and the extent that nursing is valued by society (p < .001). The students who were most interested in older people nursing had higher self-reported competence level (p < .001).ConclusionIn the studied sample of future nurse professionals, interest in older people nursing is low at a time when the field suffers from workforce shortage. As for quality workforce, it was promising that the students who considered working in the field also evaluated themselves as competent.Implications for practiceMultidimensional actions are required to promote interest in the field, including continued development of competence in both undergraduate education and workplaces, and investing in various career pathways to envisage potential opportunities.

Project description:IntroductionEconomic evaluations of tobacco control policies targeting adolescents are scarce. Few take into account real-world, large-scale implementation costs; few compare cost-effectiveness of different policies across different countries. We assessed the cost-effectiveness of five tobacco control policies (nonschool bans, including bans on sales to minors, bans on smoking in public places, bans on advertising at points-of-sale, school smoke-free bans, and school education programs), implemented in 2016 in Finland, Ireland, the Netherlands, Belgium, Germany, Italy, and Portugal.MethodsCost-effectiveness estimates were calculated per country and per policy, from the State perspective. Costs were collected by combining quantitative questionnaires with semi-structured interviews on how policies were implemented in each setting, in real practice. Short-term effectiveness was based on the literature, and long-term effectiveness was modeled using the DYNAMO-HIA tool. Discount rates of 3.5% were used for costs and effectiveness. Sensitivity analyses considered 1%-50% short-term effectiveness estimates, highest cost estimates, and undiscounted effectiveness.FindingsNonschool bans cost up to €253.23 per healthy life year, school smoking bans up to €91.87 per healthy life year, and school education programs up to €481.35 per healthy life year. Cost-effectiveness depended on the costs of implementation, short-term effectiveness, initial smoking rates, dimension of the target population, and weight of smoking in overall mortality and morbidity.ConclusionsAll five policies were highly cost-effective in all countries according to the World Health Organization thresholds for public health interventions. Cost-effectiveness was preserved even when using the highest costs and most conservative effectiveness estimates.ImplicationsEconomic evaluations using real-world data on tobacco control policies implemented at a large scale are scarce, especially considering nonschool bans targeting adolescents. We assessed the cost-effectiveness of five tobacco control policies implemented in 2016 in Finland, Ireland, the Netherlands, Belgium, Germany, Italy, and Portugal. This study shows that all five policies were highly cost-effective considering the World Health Organization threshold, even when considering the highest costs and most conservative effectiveness estimates.

Dataset Information

Common measure of quality of life for people with systemic sclerosis across seven European countries: a cross-sectional study.

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Common measure of quality of life for people with systemic sclerosis across seven European countries: a cross-sectional study.

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