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- Buchanan, E. M., et al.
(författare)
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The Psychological Science Accelerator's COVID-19 rapid-response dataset
- 2023
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Ingår i: Scientific Data. - : Springer Science and Business Media LLC. - 2052-4463. ; 10:1
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Tidskriftsartikel (refereegranskat)abstract
- In response to the COVID-19 pandemic, the Psychological Science Accelerator coordinated three large-scale psychological studies to examine the effects of loss-gain framing, cognitive reappraisals, and autonomy framing manipulations on behavioral intentions and affective measures. The data collected (April to October 2020) included specific measures for each experimental study, a general questionnaire examining health prevention behaviors and COVID-19 experience, geographical and cultural context characterization, and demographic information for each participant. Each participant started the study with the same general questions and then was randomized to complete either one longer experiment or two shorter experiments. Data were provided by 73,223 participants with varying completion rates. Participants completed the survey from 111 geopolitical regions in 44 unique languages/dialects. The anonymized dataset described here is provided in both raw and processed formats to facilitate re-use and further analyses. The dataset offers secondary analytic opportunities to explore coping, framing, and self-determination across a diverse, global sample obtained at the onset of the COVID-19 pandemic, which can be merged with other time-sampled or geographic data.
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| 7. |
- Fanjul, María, et al.
(författare)
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Tethered cord in patients affected by anorectal malformations : a survey from the ARM-Net Consortium
- 2017
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Ingår i: Pediatric Surgery International. - : Springer Science and Business Media LLC. - 0179-0358 .- 1437-9813. ; 33:8, s. 849-854
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: The goal of this study was to determine the degree of consensus in the management of spinal cord tethering (TC) in patients with anorectal malformation (ARM) in a large cohort of European pediatric centers. Methods: A survey was sent to pediatric surgeons (one per center) members of the ARM-Net Consortium. Results: Twenty-four (86%) from ten different countries completed the survey. Overall prevalence of TC was: 21% unknown, 46% below 15, and 29% between 15 and 30%. Ninety-six agreed on screening all patients for TC regardless the type of ARM and 79% start screening at birth. Responses varied in TC definition and diagnostic tools. Fifty percent of respondents prefer ultrasound (US), 21% indicate either US or magnetic resonance (MRI) based on a pre-defined risk of presenting TC, and 21% perform both. Discrepancy exists in complementary test: 82% carry out urodynamic studies (UDS) and only 37% perform somatosensory-evoked potentials (SSEP). Prophylactic untethering is performed in only two centers (8%). Conclusions: Survey results support TC screening in all patients with ARM and conservative management of TC. There is discrepancy in the definition of TC, screening tools, and complementary test. Protocols should be developed to avoid such variability in management.
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- Lindwall, Magnus, 1975, et al.
(författare)
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Method Effects: The Problem With Negatively Versus Positively Keyed Items
- 2012
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Ingår i: Journal of Personality Assessment. - 0022-3891. ; 94:2, s. 196-204
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Tidskriftsartikel (refereegranskat)abstract
- Using confirmatory factor analyses, we examined method effects on Rosenberg's Self-Esteem Scale (RSES; Rosenberg, 1965) in a sample of older European adults. Nine hundred forty nine community-dwelling adults 60 years of age or older from 5 European countries completed the RSES as well as measures of depression and life satisfaction. The 2 models that had an acceptable fit with the data included method effects. The method effects were associated with both positively and negatively worded items. Method effects models were invariant across gender and age, but not across countries. Both depression and life satisfaction predicted method effects. Individuals with higher depression scores and lower life satisfaction scores were more likely to endorse negatively phrased items.
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- Thogersen-Ntoumani, C, et al.
(författare)
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Health and well-being profiles of older European adults
- 2011
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Ingår i: EUROPEAN JOURNAL OF AGEING. - : Springer Science and Business Media LLC. - 1613-9372 .- 1613-9380. ; 8:2, s. 75-85
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Tidskriftsartikel (refereegranskat)abstract
- The purpose of the present study was to identify health and well-being typologies among a sample of older European adults. Further, we examined various demographic, social, and health behaviour characteristics that were used to discriminate between such groups. The participants were 1,381 community-dwelling adults aged 65 years and above (M age = 73.65; SD = 7.77) from six European Union (EU) countries who completed self-reported questionnaires. Hierarchical cluster analysis was initially conducted followed by a k means analysis to confirm cluster membership. Four clusters were identified and validated: ‘good health and moderate functioning’ (38.40%), ‘moderate health and functioning’ (30.84%), ‘obese and depressed’ (20.24%) and ‘low health and functioning’ (10.51%). The groups could be discriminated based on age, gender, nationality, years of education, social isolation and health behaviours (alcohol consumption and walking behaviour). The results of the study demonstrate heterogeneity with regard to the relationships between the variables examined. The information can be used in targeting older Europeans for health promotion interventions.
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- Hageman, Isabel C., et al.
(författare)
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A Quality Assessment of the ARM-Net Registry Design and Data Collection
- 2023
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Ingår i: Journal of Pediatric Surgery. - : Elsevier BV. - 0022-3468. ; 58:10, s. 1921-1928
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Tidskriftsartikel (refereegranskat)abstract
- Background: Registries are important in rare disease research. The Anorectal Malformation Network (ARM-Net) registry is a well-established European patient registry collecting demographic, clinical, and functional outcome data. We assessed the quality of this registry through review of the structure, data elements, collected data, and user experience. Material and methods: Design and data elements were assessed for completeness, consistency, usefulness, accuracy, validity, and comparability. An intra- and inter-user variability study was conducted through monitoring and re-registration of patients. User experience was assessed via a questionnaire on registration, design of registry, and satisfaction. Results: We evaluated 119 data elements, of which 107 were utilized and comprised 42 string and 65 numeric elements. A minority (37.0%) of the 2278 included records had complete data, though this improved to 83.5% when follow-up elements were excluded. Intra-observer variability demonstrated 11.7% incongruence, while inter-observer variability was 14.7%. Users were predominantly pediatric surgeons and typically registered patients within 11–30 min. Users did not experience any significant difficulties with data entry and were generally satisfied with the registry, but preferred more longitudinal data and patient-reported outcomes. Conclusions: The ARM-Net registry presents one of the largest ARM cohorts. Although its collected data are valuable, they are susceptible to error and user variability. Continuous evaluations are required to maintain relevant and high-quality data and to achieve long-term sustainability. With the recommendations resulting from this study, we call for rare disease patient registries to take example and aim to continuously improve their data quality to enhance the small, but impactful, field of rare disease research. Level of Evidence: V.
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