| 1. |
- Aad, G, et al.
(author)
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- 2015
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swepub:Mat__t
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- Thomas, HS, et al.
(author)
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- 2019
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swepub:Mat__t
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| 9. |
- Howells, Laura, et al.
(author)
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RECAP OF ATOPIC ECZEMA (RECAP) : ASSESSING ECZEMA CONTROL FROM THE PATIENT AND PARENT PERSPECTIVE
- 2021
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In: Acta Dermato-Venereologica. - : Medical journals Sweden AB. - 0001-5555 .- 1651-2057. ; 101:Suppl. 221, s. 29-29
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Journal article (other academic/artistic)abstract
- Background: The Harmonising Outcome Measures for Eczema (HOME) initiative recommend long-term control of eczema is measured in all clinical trials over 3 months in duration, but prior to this work, no instrument had been identified as suitable for inclusion in the core outcome set.Objective: To develop a ques-tionnaire to capture ‘eczema control’ from a patient/caregiver’s perspective.Methods: A mixed-methods approach was used to develop and refine a conceptual framework, generate, refine and select items and initial testing of the items. Questionnaire con-tent was generated and refined via a focus group, expert panel meetings, cognitive interviews and an online survey with people with eczema/caregivers. Impact analysis and multivariable li-near regression were used for item selection. The distribution of scores and construct validity were assessed.Results: Fourteen expert panel members (including patients, caregivers, healthcare professionals and methodologists) co-produced the instrument; with input from people with eczema/caregivers via a focus group (n = 6), cognitive interviews (n = 13) and an online survey (n = 330). Recap of atopic eczema (RECAP) is a seven-item questionnaire with a self-reported and caregiver-reported version. Initial testing suggested no floor or ceiling effects and good construct validity. Positive correlation with the Patient-Oriented Eczema Measure (POEM) was confirmed (r(258)=0.83, p < 0.001).Conclusions: RECAP is appropriate and feasible for measuring eczema control in clinical trials. Testing of measurement properties and translation to other languages is ongoing. RECAP has been recommended for inclusion in the HOME core outcome set for clinical trials and the HOME clinical practice set.
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| 14. |
- Lerang, K., et al.
(author)
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Mortality and years of potential life loss in systemic lupus erythematosus: a population-based cohort study
- 2014
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In: Lupus. - : SAGE Publications. - 0961-2033 .- 1477-0962. ; 23:14, s. 1546-1552
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Journal article (peer-reviewed)abstract
- Multiple sources were used to identify 325 systemic lupus erythematosus (SLE) patients within the city of Oslo during 1999-2009 who met >= 4 of the American College of Rheumatology (ACR) criteria. The survival, standard mortality rate (SMR), years of potential life loss before 60 years of age (YPLL60) and causes of death of these patients were examined and compared to a matched control population. Only inception cases (127) were studied in the calculation of survival. The analysis includes underlying, immediate and contributing causes of death. The five-and 10-year survival was 95% and 90%, respectively, which was significantly reduced when compared to the general population. A total of 50 SLE patients died during the study period. Overall SMR was 3.0 (95% confidence interval (CI) 2.2-3.8) with the highest SMR found for female patients aged 16-39 years old. SLE patients had a 10 times higher rate of YPLL60 compared to the control group. YPLL emphasizes active disease and reduces the importance of cancer as a cause of death in SLE. This study demonstrates that YPLL gives additional and useful information for the prognosis of SLE, supplementing traditional methods of measuring mortality.
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