| 1. |
- Bousquet, Jean, et al.
(författare)
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Allergic Rhinitis and its Impact on Asthma (ARIA) Phase 4 (2018) : Change management in allergic rhinitis and asthma multimorbidity using mobile technology
- 2019
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Ingår i: Journal of Allergy and Clinical Immunology. - : Elsevier. - 0091-6749 .- 1097-6825. ; 143:3, s. 864-879
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Tidskriftsartikel (refereegranskat)abstract
- Allergic Rhinitis and its Impact on Asthma (ARIA) has evolved from a guideline by using the best approach to integrated care pathways using mobile technology in patients with allergic rhinitis (AR) and asthma multimorbidity. The proposed next phase of ARIA is change management, with the aim of providing an active and healthy life to patients with rhinitis and to those with asthma multimorbidity across the lifecycle irrespective of their sex or socioeconomic status to reduce health and social inequities incurred by the disease. ARIA has followed the 8-step model of Kotter to assess and implement the effect of rhinitis on asthma multimorbidity and to propose multimorbid guidelines. A second change management strategy is proposed by ARIA Phase 4 to increase self-medication and shared decision making in rhinitis and asthma multimorbidity. An innovation of ARIA has been the development and validation of information technology evidence-based tools (Mobile Airways Sentinel Network [MASK]) that can inform patient decisions on the basis of a self-care plan proposed by the health care professional.
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| 2. |
- Beukelman, Timothy, et al.
(författare)
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A survey of national and multi-national registries and cohort studies in juvenile idiopathic arthritis : challenges and opportunities
- 2017
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Ingår i: Pediatric Rheumatology. - : BIOMED CENTRAL LTD. - 1546-0096. ; 15
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Tidskriftsartikel (refereegranskat)abstract
- Background: To characterize the existing national and multi-national registries and cohort studies in juvenile idiopathic arthritis (JIA) and identify differences as well as areas of potential future collaboration.Methods: We surveyed investigators from North America, Europe, and Australia about existing JIA cohort studies and registries. We excluded cross-sectional studies. We captured information about study design, duration, location, inclusion criteria, data elements and collection methods.Results: We received survey results from 18 studies, including 11 national and 7 multi-national studies representing 37 countries in total. Study designs included inception cohorts, prevalent disease cohorts, and new treatment cohorts (several of which contribute to pharmacosurveillance activities). Despite numerous differences, the data elements collected across the studies was quite similar, with most studies collecting at least 5 of the 6 American College of Rheumatology core set variables and the data needed to calculate the 3-variable clinical juvenile disease activity score. Most studies were collecting medication initiation and discontinuation dates and were attempting to capture serious adverse events.Conclusion: There is a wide-range of large, ongoing JIA registries and cohort studies around the world. Our survey results indicate significant potential for future collaborative work using data from different studies and both combined and comparative analyses.
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| 3. |
- Bousquet, Jean, et al.
(författare)
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ARIA digital anamorphosis : Digital transformation of health and care in airway diseases from research to practice
- 2021
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Ingår i: Allergy. European Journal of Allergy and Clinical Immunology. - : John Wiley & Sons. - 0105-4538 .- 1398-9995. ; 76:1, s. 168-190
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Forskningsöversikt (refereegranskat)abstract
- Digital anamorphosis is used to define a distorted image of health and care that may be viewed correctly using digital tools and strategies. MASK digital anamorphosis represents the process used by MASK to develop the digital transformation of health and care in rhinitis. It strengthens the ARIA change management strategy in the prevention and management of airway disease. The MASK strategy is based on validated digital tools. Using the MASK digital tool and the CARAT online enhanced clinical framework, solutions for practical steps of digital enhancement of care are proposed.
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| 4. |
- Bousquet, J. Jean, et al.
(författare)
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Next-generation ARIA care pathways for rhinitis and asthma : a model for multimorbid chronic diseases
- 2019
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Ingår i: Clinical and Translational Allergy. - : BMC. - 2045-7022. ; 9
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Forskningsöversikt (refereegranskat)abstract
- Background: In all societies, the burden and cost of allergic and chronic respiratory diseases are increasing rapidly. Most economies are struggling to deliver modern health care effectively. There is a need to support the transformation of the health care system into integrated care with organizational health literacy.Main body: As an example for chronic disease care, MASK (Mobile Airways Sentinel NetworK), a new project of the ARIA (Allergic Rhinitis and its Impact on Asthma) initiative, and POLLAR (Impact of Air POLLution on Asthma and Rhinitis, EIT Health), in collaboration with professional and patient organizations in the field of allergy and airway diseases, are proposing real-life ICPs centred around the patient with rhinitis, and using mHealth to monitor environmental exposure. Three aspects of care pathways are being developed: (i) Patient participation, health literacy and self-care through technology-assisted "patient activation", (ii) Implementation of care pathways by pharmacists and (iii) Next-generation guidelines assessing the recommendations of GRADE guidelines in rhinitis and asthma using real-world evidence (RWE) obtained through mobile technology. The EU and global political agendas are of great importance in supporting the digital transformation of health and care, and MASK has been recognized by DG Sante as a Good Practice in the field of digitally-enabled, integrated, person-centred care.Conclusion: In 20 years, ARIA has considerably evolved from the first multimorbidity guideline in respiratory diseases to the digital transformation of health and care with a strong political involvement.
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| 5. |
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| 6. |
- Gato, Jorge, et al.
(författare)
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Psychosocial Effects of the COVID-19 Pandemic and Mental Health Among LGBTQ plus Young Adults : A Cross-Cultural Comparison Across Six Nations
- 2022
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Ingår i: International Journal of Sexual Health. - : Taylor & Francis. - 1931-7611 .- 1931-762X. ; 34:Suppl. 1, s. 105-105
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Tidskriftsartikel (övrigt vetenskapligt/konstnärligt)abstract
- Across the world, people have seen their lives interrupted by the COVID-19 pandemic. Using an online survey, we explored how the psychosocial effects of the pandemic affected the mental health of LGBTQþ young adults who were confined with their parents during the lockdown period (N ¼ 1,934), from six countries: Portugal, UK, Italy, Brazil, Chile, and Sweden.South American participants experienced more negative psychosocial effects of the pandemic. Depression and anxiety were higher among participants who were younger, not working, living in Europe and who reported feeling more emotionally affected by the pandemic, uncomfortable at home, or isolated from non-LGBTQ friends.Not attending higher education predicted depression while not being totally confined at home, residing habitually with parents, and fearing more future infec-tion predicted anxiety. LGBTQþ community groups, as well as health and educational services should remain particularly attentive to the needs of LGBTQþ young adults during health crises.Conflict of Interest and Disclosure Statement: No conflict of interest
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| 7. |
- Gato, Jorge, et al.
(författare)
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Psychosocial Effects of the COVID-19 Pandemic and Mental Health among LGBTQ+ Young Adults : A Cross-Cultural Comparison across Six Nations
- 2021
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Ingår i: Journal of Homosexuality. - : Haworth Press. - 0091-8369 .- 1540-3602. ; 68:4, s. 612-630
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Tidskriftsartikel (refereegranskat)abstract
- Across the world, people have seen their lives interrupted by the COVID-19 pandemic. Using an online survey, we explored how the psychosocial effects of the pandemic affected the mental health of LGBTQ+ young adults who were confined with their parents during the lockdown period (N = 1,934), from six countries: Portugal, UK, Italy, Brazil, Chile, and Sweden. South American participants experienced more negative psychosocial effects of the pandemic. Depression and anxiety were higher among participants who were younger, not working, living in Europe and who reported feeling more emotionally affected by the pandemic, uncomfortable at home, or isolated from non-LGBTQ friends. Not attending higher education predicted depression while not being totally confined at home, residing habitually with parents, and fearing more future infection predicted anxiety. LGBTQ+ community groups, as well as health and educational services should remain particularly attentive to the needs of LGBTQ+ young adults during health crises.
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| 8. |
- Rypdal, Veronika, et al.
(författare)
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Validation of prediction models of severe disease course and non-achievement of remission in juvenile idiopathic arthritis: part 1-results of the Canadian model in the Nordic cohort.
- 2019
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Ingår i: Arthritis research & therapy. - : Springer Science and Business Media LLC. - 1478-6362 .- 1478-6354. ; 21:1
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Tidskriftsartikel (refereegranskat)abstract
- Models to predict disease course and long-term outcome based on clinical characteristics at disease onset may guide early treatment strategies in juvenile idiopathic arthritis (JIA). Before a prediction model can be recommended for use in clinical practice, it needs to be validated in a different cohort than the one used for building the model. The aim of the current study was to validate the predictive performance of the Canadian prediction model developed by Guzman et al. and the Nordic model derived from Rypdal et al. to predict severe disease course and non-achievement of remission in Nordic patients with JIA.The Canadian and Nordic multivariable logistic regression models were evaluated in the Nordic JIA cohort for prediction of non-achievement of remission, and the data-driven outcome denoted severe disease course. A total of 440 patients in the Nordic cohort with a baseline visit and an 8-year visit were included. The Canadian prediction model was first externally validated exactly as published. Both the Nordic and Canadian models were subsequently evaluated with repeated fine-tuning of model coefficients in training sets and testing in disjoint validation sets. The predictive performances of the models were assessed with receiver operating characteristic curves and C-indices. A model with a C-index above 0.7 was considered useful for clinical prediction.The Canadian prediction model had excellent predictive ability and was comparable in performance to the Nordic model in predicting severe disease course in the Nordic JIA cohort. The Canadian model yielded a C-index of 0.85 (IQR 0.83-0.87) for prediction of severe disease course and a C-index of 0.66 (0.63-0.68) for prediction of non-achievement of remission when applied directly. The median C-indices after fine-tuning were 0.85 (0.80-0.89) and 0.69 (0.65-0.73), respectively. Internal validation of the Nordic model for prediction of severe disease course resulted in a median C-index of 0.90 (0.86-0.92).External validation of the Canadian model and internal validation of the Nordic model with severe disease course as outcome confirm their predictive abilities. Our findings suggest that predicting long-term remission is more challenging than predicting severe disease course.
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| 9. |
- Tucker, Lori B, et al.
(författare)
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Children with systemic autoinflammatory diseases have multiple, mixed ethnicities that reflect regional ethnic diversity.
- 2021
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Ingår i: Clinical and experimental rheumatology. - : Clinical and Experimental Rheumatology. - 0392-856X .- 1593-098X. ; 39 Suppl 132:5, s. 124-128
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Tidskriftsartikel (refereegranskat)abstract
- To evaluate the ethnic diversity of children with a systemic autoinflammatory disease (SAID) in a multi-ethnic Canadian province.Self-reported ethnicity of 149 children and adolescents with a SAID in British Columbia, Canada, was analysed for ethnic representation among individual patients, across the cohort, within particular SAIDs, and compared to provincial census data on ethnic diversity.Half of reported cases had a diagnosis of either PFAPA (23.5%) or an unclassifiable autoinflammatory syndrome (31.5%), with a monogenic SAID diagnosed in only 12.8% of cases. The majority of participants (73.1%) were mixed ethnicity with European and Asian heritage reported most frequently (57.0% and 23.0% of all responses, respectively). Ethnic diversity reflected regional diversity except for West Asian, Arabic, Jewish, and Eastern European heritage, which were over-represented in SAID patients, and Chinese descent, which was under-represented in our cohort compared to the general population of British Columbia.Results from this study show extensive multi-ethnic diversity in individual patients and across the various SAIDs inclusive of monogenic SAIDs that are frequently associated with particular ethnicities. Although not disproportionately represented, this is the first report of systemic autoinflammatory disease in Canadian children of Indigenous heritage.
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| 10. |
- Vázquez, Inês, et al.
(författare)
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Psychological Adjustment Profiles of LGBTQ+ Young Adults Residing with Their Parents during the COVID-19 Pandemic : An International Study
- 2023
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 20:4
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Tidskriftsartikel (refereegranskat)abstract
- The COVID-19 pandemic has been associated with poor mental health symptoms, particularly among vulnerable populations such as LGBTQ+ individuals. In the present study, we aimed to (i) identify different psychological adjustment profiles among LGBTQ+ young adults during the COVID-19 pandemic and compare LGBTQ+ young adults in relation to (ii) sociodemographic characteristics and COVID-19-related experiences and (iii) the internal and external protective resources associated with each adjustment profile. An online questionnaire was administered to 1699 LGBTQ+ young adults from six countries (Brazil, Chile, Italy, Portugal, Sweden, and the UK). A cluster analysis was conducted, and four profiles of psychological adjustment were identified: unchallenged, resilient, distressed, and at-risk. The at-risk cluster scored lowest in social support (particularly from family). The profiles of participants who experienced the highest levels of pandemic adversity (at-risk and resilient) comprised mostly South American participants, those under lockdown at the time of survey completion, those who self-identified as transgender and non-binary, and those with a plurisexual sexual orientation. Interventions should consider strategies to help young adults maintain support systems and reinforce the value of positive family relationships. Specific groups within the LGBTQ+ community that seem to be in a particularly vulnerable situation may need additional tailored support.
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